Tuesday, May 26, 2009

To clarify...

A few people have asked as to whether Genea has seen a doctor on the subject of her urinating issues. She has. When she was with the other family and had Failure to T hrive (did not grow or gain weight for 2 years), she had every medical test under the sun. This includes CAT scans, x- rays, MRI, blood tests, medication tests, blood sugar tests, urinalysis and all sorts of other tests I never heard of. She got her very own Pediatric Endocrinologist at a specialty Childrens Hospital.Two important things were learned. First, she had burned out her bodies ability to produce stress hormone. Second, she is completely normal and healthy physically otherwise.

I have spoken with her pediatrician many times. We agree that this is an emotional problem for Genea. It is exacerbated when she is under stress. She also gets "stuck" in certain reactions, certain cycles, and it can take a lot to push her out of it. She does not get consequences for night time bed wetting. It is only when it happens in the day time.

I made up and brought the list of symptoms to Genea's psychiatrist because I tend to be unable to describe clinically significant issues to him. As I pointed out, this is NOT how I see Genea. This was a list of things I thought were important for him to know medically. I thought people might be interested to see the full range of what makes up a stretch of disordered behavior in our house here. Usually in the appointments I stumble along, yammer some nonsense and when we are almost done he will say "OH! You didnt tell me THAT before, well THATS different"(my interpretation). I did not list off things that all kids do. The highlighted things are excessive. Frequent, intense and severe. Not what your average child does. She is not your average child. Likewise her experiences do not make her exempt from serious psychological disorder. Her background does not earn her a pass.

We do not spend our days drowning in Genea's problems. Every day is new. There is no "hangover" from the previous day. Every day starts with few restrictions (no cake for breakfast) for both girls. I have been coincidentally scheduling surprise popcorn and movie parties on days that she is dry. I spontaneously hand out treats and hugs and high 5's for being considerate to others. She earns "chips" for positive behaviors that can be exchanged for painting toenails, picking the restaurant on take out night, etc. Several of the categories are "givens" to ensure there is always daily success in something, no matter what else has happened. Every night we have snuggle time for at least a half hour, tickle time, and kiss kiss time, we just do it, not as anything but just being together. No matter what else happens we do these things. We spend 15 -20 minutes after school every day talking about school and her day and whatever the teacher sent home, drawings and stuff. Fun things, things that were hard, whatever. We do strong sitting together, as well as tapping together. These are the things I can think of offhand to write, it is not rigidly structured, it is just our days. She had to have 5 dry days to get back in her undies and she has made it. Today she went to school with undies on again. She came home with the same undies on, dry. This morning, for the first time ever, Genea got up and went to the bathroom and used it. Teena does all the same with chips and things so that Genea is not singled out.

Incidentally, I have one other bit of information from Genea's other family. She was continent with them because they had a severe and extreme consequence for urinating outside of the toilet. I am not willing to do that and I am not going to discuss what it was. I have tried everything else I can think of. Kind and encouraging. Supportive, hugging, loving. I have given out stickers, and made charts and given out candy. I have sympathized, structured, timed and rewarded on this subject. When it was just a problem here at home we used all sorts of different ways to keep her dry. It was when she started going on herself at school that I decided I needed to really come down hard on this. I know folks are aware of what can happen to a kid like Genea at school with classmates. The kid who pees herself will become a target for years of torment, bullying and abuse. Being this hard on her is not what I want to do and it is not how I want to do it. It is what is working.

In most ways, Genea has grown and developed and is a great little kid. And while I myself may often wonder if I can really help her (who do I think I am?), the proof is in the shoes. After living here for a month, she started growing. She grew 4 or 5 shoe sizes in 3 months. She grew 11 inches in 12 months. Yes that is right. After about 6 months, and after doing enormous amounts of research, reading and reading and reading, learning words I still cannot spell, I was able to put some pieces together regarding her medical condition, took another approach and within another 6 months we were able to throw away her Medic Alert bracelet. Yes, I literally threw it into a corner behind the TV somewhere. (Syringes I disposed of differently). My point is, I am doing my best. I have left no stone unturned and I do not intend to. My instincts have been dead on so far. I forget how frightening the graphic terminology can be and how discouraging it can sound. It is all real. It is not everything and it is not defining of her. It seems I need to be more clear. I have spent too much recent post space on the negatives. So I will try to be more clear and much more balanced.


  1. Oh hell, did you scare someone or something?

    It is the same with our daughter. I knew we were doing things right somehow because she had been stuck around 50 pounds for about 5 years when we got her...and she was the height of your average 5 yr old. Now? She looks like most other 14 yr olds. Tall, lanky, but nothing out of the ordinary. She is now 5'1" and quickly gaining on me. I wonder if her body had burned out its ability to produce stress hormones as well. If/when you go back to work, you could research that :)

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  3. (oops, typo)

    I knew that underneath all that sarcasm and "I don't cook" jibberish was a real super mom who knows exactly what she's doing! Reading Genea's story is truly inspiring.

  4. That is one of the sucky things about being stuck in foster care, everyone wants to focus on the psychological issues we are dealing with. I think paperwork stresses me out because every bad thing has to be written down. Defiance x 1,000 - fits x times a day.

    When in actuality there are more fits and defiance than a "normal" kid but it's not like we wallow in it all day long.

    Good luck with the pee:)

  5. It sounds like you've covered all the bases with regard to G's incontinence. I didn't mean to imply that you never considered there could be a medical problem and that you didn't have the usual medical tests.
    I feel sad for Genea because I remember how upset my bedwetting problem made me and my parents. The fact that it involves a "private" part of the body and can't be compared to something like, say, frequent nosebleeds, makes it even more embarrassing. It was worth the pain and the surgery to finally find out that the problem was physical and not psychological.
    Genea has come a long way since she's been with you and while she still has far to go she's a beautiful child and you're a great mommy.

  6. I just wanted to clear up what we are doing here. I realized I was only giving one perspective on a small part of our days that left open a lot of questions. So I wanted to explain the other 95% of the picture. I was serving up liver without onions, no salad, no sweet potatoes with caramel sauce and no desert. For example.
    A number of people had asked the same questions, IRL, email and here. Thats all. I am happy people asked because it gave me a chance to explain! I am also happy for people to make suggestions and give examples because I may not have thought of something I could be trying.
    That's all!

  7. Great job Mama! She may still have a way to go, but look how far she's come. Amazing. Kudos to you AND to her. :)

  8. Oh, my God. I'm sending the Hoovers to you. I'm certain they'll turn out better at your house because I just got soooooo tired reading about how nice you are. I can hear Billy Joel singing right now, "She's got a way about her". Except it's your way with urine.

    Honestly, though, how wonderful it would be to have you as a mother to come home to. I'm so impressed! And I get accused of having depression from 2:30 pm to 7:30 am each week day and all weekend. I need to take some notes from you.

    And please mark me "present and accounted for" in the "reading and responding to your blog" category. I do apologize for my absence.

  9. You are remarkable! I'm glad you are a stay-at-home mommy because otherwise you'd not have the energy to do it. It would all be keeping up with laundry and trying to put food on the table. Working is nice but you lose enjoyment of life at home.

    The growing is wonderful news.

    The very idea of "burning out your stress hormone" is horrific.

  10. You are a strong, loving, advocating (accidental) mommy.

    Anyone who says otherwise can be sent to Russia. I'll take them on.

  11. Amazing! Eleven inches in one year? Four or 5 shoe sizes? You deserve an AWARD for coming so far so fast. The other issues will take time and I know it's hard to be patient. Especially with the wetting issue. I know you can do it. You are Awesome!!!!!!

  12. Hi. I just discovered your blog and have been enjoying a bit of back-reading. I'm Mum to my beautiful 2 year old daughter, who I am blessed to have been able to adopt.
    I had a thought about Genea's P issue that I hope may be useful: you mentioned that her former adoptive family had serious consequences for P outside the toilet, which indicates that it had been a problem earlier. The consequence would have resulted in stress and Genea may feel in some way that her toileting caused this family to reject her. She may be using this as a test for you to see if it will make you reject her too. She may also be waiting to see how long it is before you implement the serious consequence she endured previously.
    I wonder if doing the complete opposite of serious consequences might help - ignoring the negative and only giving rewards for the desired behaviour. As she's had so much experience of negative responses and rejection, it will most likely take a long time to convince her that nothing she can do will cause you to reject her.
    I don't mean this as a criticism at all and want to say I think you're doing a wonderful job with your girls. :)

  13. Hi Kate- thanks for coming in!!! I totally agreed with you when Genea got here and for about the first year. The first p accident she had with us, in the first 2 weeks or so well, she just shattered. Just lost it completely. But then it bacame so not accidental. She would sit on the couch, pee. She would be playing, pee. In the car for 10 minutes, pee. Changing her clothes, pee. It was everywhere and all the time. I tried SO HARD to be understanding and encouraging and positive EXACTly for the reasons you suggested. After many months, I finally had her start to clean the potty and after twice, she stopped. I told her she obviously needed to spend more time by the toilet so she may as well clean it while she was there (really I just sprayed some soap in it and handed her the long handled brush). Then every month or so, the pee came back for a few days, back to cleaning the potty and it would stop again. It just recently, past 6 months or so, got really bad and then came potty boot camp.
    So I totally get where you are coming from because that is where I started. Maybe I gave up too soon, it is quite possible. There are a lot of other things I don't care a whip about. Genea hordes stuff rabidly, but I let her keep it all with her in her bed and cover it with the comforter. As long as there is room for her, its fine. Don't even think about throwing away one of the 12 projects every day from school- I had a 2 ft pile on a chair in a corner of all of it every semester. The pee thing, it just went too far and was too much of a hygiene issue and I worried it was becoming a habit.
    (They are my comments and I'll hijack them if I want to lol!)

  14. I hear in your comments the second guessing that I do every day. Sadly, attachment issues are so pervasive and affect each child differently, so it's incredibly difficult to know how best to approach any given situation. Then there are so many situations to contend with...sigh...I hear you that the P issue is one that just needs to be resolved. Be kind to yourself - you're a wonderful mum to both your girls. :)


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