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this soooooo pisses me off......someone please help me deal with this one

dledden's picture

basic background for those of you who don't know my situation. blended family of me, fiancee, my bio son 9, ss8 and bio son 6. This relates to ss8, autistic, who received zero treatment in any fashion for his autism prior to my becoming involved with fiancee 3 yrs ago, because fiancee was in COMPLETE DENIAL. Anyhow, ss8 went to see a neurologist who ordered a battery of tests (chromosomal, dna, and brain scan). Results came back that ss8 has something called Autosomal Dominant Polycystic Kidney Disease. So, neurology referred us to Genetics depts. and Nephrology Depts. at the local children's hospital. They haven't called us to make an appt. so I proactively called today. Here's where it starts...........

I'm on the phone with the genetics dept. and they give me an appt. My name, phone number, etc. is on file with all of ss8's doctors/hospitals, etc. because I AM THE ONE WHO HANDLES ALL OF HIS MEDICAL CARE!!!!! So, they proceed to tell me that the genetic counselors are going to have to call mom and dad about a week before the appt. to gather family history data, as this disease is genetically passed down from a parent to a child. I told her that she can call DAD but that he can't really talk much during the day while he's at work, so their best bet is to call me. So, she starts to get an ATTITUDE with me about how I won't be able to answer the questions they will want to know, about the pregnancy, delivery, first years of life, etc. I started to LAUGH out loud and told her that neither would the biomom because she has been high on drugs since before she was ever even pregnant with this child!!!! She CONTINUES to tell me that they will have to talk to his biomom.....OMG, are you FUCKING KIDDING ME lady? I just told you that this woman is a heroin addict and barely coherent when we hear from her once every 3 months....Finally I just realized I needed to CALM DOWN and said "fine, call dad, he'll tell you what he can"......the phonecall ended there, and I imeediately went to the gym afterwords to blow off steam...

any of you stepmoms or dads out there ever been treated like this, or feel like your input was disregarded just because you didn't give birth to a person?

Jsmom's picture

Yes - Nothing you can do about it, unless you adopt him. I am sorry about the diagnosis. But, I do understand that they need family background from both of them, since this is a genetic disease. There may be information that you won't know about Aunts and Uncles that they will need.

My son was born with an indicator of possible kidney disease and because his father is deceased there were some questions I couldn't answer the nephrologist and had to have my FIL give me some information about my late husband that I didn't know about his first transplant.

My late husband had three kidney transplants and I volunteer with the National Kidney Foundation, mentoring families. The nurse could have been nicer about it, but she was doing her job and with the HIPA laws she is really regulated what she can and can't do to protect privacy. That is why most of us have these issues at one time or another.

I will no longer take mine to the pediatrician. The doctor wouldn't tell me much last time and it wasn't worth relaying the information again to DH. He can just handle it.

ctnmom's picture

YES! CTBB was in summer school and living with us (age 16) his "guidance counselor" would never talk to me, I was the primary caregiver! I'd go into the school w/ Perfectsonthen3 and DDthen10months in tow, just to be sent away because I wasn't "family"! Asshole. This guy used to actually jog by my house, at one point my next door neighbors were getting some sewer work done- I serously considered moving the boards from the sewer hole when I knew he'd be by! But I'm a good catholic girl, so I din't. Biggrin

dledden's picture

What's funny is that since we started living together as a blended family, I typed up letters for the school and all it's employees that it is OK for ss8's info to be discussed with me, had fiancee sign. We did that at all his doctors, etc.

I have since had the TEACHER at school, the O/T and the P/T therapists all come to me privately and tell me that they are SO THANKFUL that SS8 finally has an ACTIVE PARENT involved in his care!!!

GoodbyeNormaJean's picture

Yeah, I didn't drop them out of my vagina and then go back to hitting the crackpipe, so I couldn't POSSIBLY know anything about them. Although I am here 24/7 helping with homework and wiping their asses. 2 out of 3 of my skids' BMs don't even know where they freaking go to school.

mnmattvike's picture

I hear ya. I have 2 kids myself that I share 50-50 custody and then my fiancee has 3 kids. ALl of her kids are special needs like ADHD, ADD, ODD, and OCD. 2 get help in Special Education. I too, sad as it may sound is the primary caregiver to my soon to be DW's 3 kids. I wake up in the morning and get them up, feed them a little breakfast, give meds and get them off to school. When they come home, I give afterno meds and make them all a pb & j sandwich until I get home at 5 to make supper and help them with homework. I go to all of their events and games. I go to most doctor appointments, I go to all parent-teacher conferences. Just yesterday ss6's teacher e-mailed me and then said she can only talk to soon to be dw. Its like I don't exist. My fiancee works part time about 16 hours a week. So, sorry hun, I pay for everything. I own the house, all 3 cars and pay all bills. Which I do call it our money though. But I do all of this and no recognition? Plus I call in all prescriptions and get re-fills and talk to the nurses. The clinic and pharmacy talk to me no problem. But the school pisses me off. So, I undewrstand your situation. Even if you can't tell the answers, atleast you could play messenger because i'm sure time is of the essence to get these tests done. Funny, the school has no problem cashing my checks for sports and lunches that I pay for the skids.

Starla's picture

Welcome to the joy of being ONLY a step mother... There should really be some adjustments with step parent/bio patent laws. The weight now needs to fall on your DH whether he has the time to do it or not. Keep in mind even though he's probably a great husband/father that he had time to make a family & he now needs to do what he's got to do as a parent!

My thoughts, your SS sounds like he would of been better off if you were his BM. Unfortunately, he's got a heroin addict for a BM. Always has upset me how kids end up paying for their parents addictions & problems. Hang in there! Sounds like you are the best person who has came into this boys life & he really needs you.

Starla's picture

DH of Starla here, you might ask your mate if the Grandmother of the SS can give any family history since the BM is so strung out. That is the only advice that I can think to give. Good luck!