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« My Left Knee (aka My Achilles Heel) | Main | Suburbia »

October 09, 2015

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Carol-Anne

You need to get this child some help. You are making this worse by exposing her to so many unstable life situations, especially over the last few years.
I can imagine how frustrated & horrifying this must be for you, but this isn't about YOU. There is something seriously wrong with this child & you need to stop broadcasting it & get her some help! (and yourself as well).

Lydia

Honey.. You're so wonderful. Genoa is so wonderful. But she needs medical help. I do not understand why you haven't had her evaluated by a child psych, so you can try something to help her. You know from chemical imbalance, and this is one. My daughter was very, very similar at Genoa's age. Her whole quality of life shot up, once we got her on Lexapro. Why would you not treat this? It's illness, not a behavior problem? You need another tool in your toolbox. You're an amazing mother, but you guys could feel and be SO much happier. Much love to all of you.

Amy

This whole post is about you and how you feel. You need to get your daughter some help and stop worrying about you. This isn't about you, it's about your daughter. She needs so much more stability than you are giving her. You don't see how she is trying to control you because the rest of your (and by extension, her) life is so chaotic?

Kellen

As a parent with a child (now older) who went through many of the same issues, please don't listen when people tell you "it's not about you". It IS about you, just like it's about Genoa. Mental illness affects EVERYONE, not just the person who has it. Obviously, how it affects you comes through in how you respond to Genoa. Medication may help, and I would strongly encourage at least researching it. Medication is not the end all and be all, though. OCD is very much a behavior issue, too. One small idea that helped my daughter was to make a checklist of ALL the things she needed to verify prior to any specific event (in your case bedtime). EVERY night we would go through the checklist, in her order, and she would mark them off one at a time. When her anxiety would begin to rise all I had to do was show her the checklist and remind her that it was taken care of. It is not going to solve all the issues, and some nights were worse than others, but it did help tremendously. In the meantime, take a deep breath, hold her tight, and remember that mental illness is treatable. Good luck!

Lisa K

You are a good mother. I am only an internet lurker who's put a few years into following this page, but I honestly believe that. You can mind fuck yourself to death about her being a witness to an unhappy marriage, different boyfriends and living situations. All of that is bullshit. The only thing that matters is that you try your best every day with whatever energy you have at the time. You there. Trying. That's what counts. Even when you fail.
I love the checklist Kellen mentioned above. And yes, if you haven't yet, get some professional help. We've needed it with my son's anxiety since he was 4. It will help you and Dave as much as her to have someone join you in the trenches. And there's been resources to help when we haven't had a lot of $. Good luck. You're not alone!

vicki

Please, please, please research PANDAS and find a PANDAS dr. near you who can possibly diagnose this and help you. Please! I think I commented on one of your blog posts or FB posts before. I have a sneaking suspicion that his is what Genoa's little body/brain is dealing with. http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/

PLEASE!!!!!

Rachael

A blog is a tiny sliver of a person's life. Amanda is a person who processes things by writing, the same way I do. ny definition, this means a lot of my blog posts are about strong feelings. They don't give a complete picture and they don't give a history, they give a glimpse into rawness and emotion.

Amanda, you aew a good person. Being a mother is hard. Watching your child struggle is SO hard. Doing what is best for both of you even if it sucks is the right thing. Lots of love.

Lori

Of COURSE it's about you. She's your daughter, she's ill, you feel helpless...good grief, it's about you both. I have OCD and PTSD and anxiety and depression and social phobia and aaaaaargh. Would you like my mother's email? Because I am certain she would feel your pain; also, she taught Early Childhood special ed for 33 years and has pretty much seen everything. Hugs. Don't forget to take care of you. The people who know you know you are doing your very best for your kids and yourself. Try not to feel guilty--this is NOT your fault. Keep your chin up.

Longtime reader

Thank you for sharing your experience and this post. You are not selfish to write from the perspective of how this feels to you. As a mother, I relate to the painful frustration of seeing a child struggling to cope, a child anxious because he/she is misinterpreting the world around them. As a person who likes to make people in general feel better, I understand how much energy is spent on creating harmony. I hope Genoa finds the way through this soon, and I hope you both get some rest.

Chris Hyde

First off, I am SO appalled by some of the previous commenters. I'm assuming they either don't know you personally or they are just extremely judgmental and condescending. Regardless, their horrible treatment of you via their comments is completely unacceptable!

Secondly, I had no idea you go through this. I'm so sorry and can't imagine the pain, wear and tear this brings to your life. You are an amazing woman and one of the strongest I know. Though I can't change a darn thing to help you, I at least can send my love and mental support for this difficult situation.

erinkavanagh@yahoo.com

I would be anxious every night too if I was sleeping in a house with strangers or knowing that I'm going to return to a house with strangers. Is she safe? Has she always been safe? Look at the root, not just the symptoms. Long time reader here, but I'm horrified for your kid right now.

rachel

as far as rechecking everything....howzabout going to all those places she wants to check every night and taking pictures of them, so she can look at them on repeat in her bed. just a thought....*shrug*

Jan

So what does Genoa's psychiatrist say about dealing with this severe OCD/anxiety? Have her meds been adjusted recently? How frequently does she see her therapist? I have the sinking feeling that the answers are, she doesn't have one, she doesn't take any, she doesn't see one. If Genoa isn't being treated for this illness, you are guilty of neglect. If her father refuses to have her treated, you need to get into court pronto to have treatment mandated. And oh yeah--how about you set aside the self indulgent lifestyle, get a decent paying job, and move into a small apartment where your kids can visit you in an environment of peace and stability instead of watching you indulge your adolescent sexual fantasies in the House of Yes? That would help both of your poor kids!

allie

For God's sake get her some help and in an more stable environment. Adults can handle spontaneity and the thrill of different and new people, and the chaos of that . ... kids (despite them tell you they "like it" ) not so much. It may not be "your fault" but your certainly not putting them first.

Amber

I'm sorry you guys are going through this. I have a highly anxious, autistic 8-year-old daughter with shades of OCD, and it is just HARD. So hard for everyone.

I wanted to share a series of workbooks that have helped us through some of our issues. We've used "What To Do When Your Temper Flares" and "What To Do When You Dread Your Bed," both to great results. There is also a workbook for kids with OCD, "What To Do When Your Brain Gets Stuck."

http://www.amazon.com/What-When-Brain-Stuck-What-/dp/1591478057/ref=sr_1_1?ie=UTF8&qid=1445277679&sr=8-1&keywords=what+to+do+when+your+brain+gets+stuck

I hope you guys find an answer that works for your family. (The biggest help to us by far was play therapy. Perhaps that could be a route for you guys?)

Good luck and best wishes.

Donna

I won't comment on Genoa's issues because I think you've been given good advice here by many others. I disagree with the commenter who is "appalled" by the "horrible treatment of you". I think most commenters are actually being pretty nice. I don't think there is anything wrong with people saying that it is possible your free love lifestyle may not be a stabilizing influence for a kid that is OCD. That's not judging the lifestyle for YOU, it's simply saying what may be true....it may not be in Genoa's best interests to be in a house with so many non family members - however nice they may be - coming and going day and night.

I will say that the constant slamming of your ex husband and past boyfriends is tiresome. You say you know how to handle abusers but continue to repeat patterns and get in to one abusive relationship after another (husband, ex boyfriend, etc.) You had a bad marriage to a man who, you say, wasn't very nice to you. From what you've also said, and what can be found pretty easily online, you weren't very nice to him either. Welcome to over 50% of marriages. Every chance you get you take a shot at him. If you consider the fact that you made him a lunch every day and he ate fast food instead as "abuse" then you seriously need some fucking perspective. I suggest donating some time to a women's shelter.

I believe that this issue with your daughter must be exhausting and terrifying and I really feel for what you are going through in that respect. I hope you find an answer. But, the constant public airing of your bad blood with their father - where your children can see it one day, maybe they already have if they are as computer/phone savvy as you claim - is bad parenting. Please stop doing it for their sake. Sit around with your girlfriends, have a glass of wine and rail on all the horrible men you've met in your life til the cows come home. Keep it off the internets.

Melissa C

I am so sorry that you and Genoa are going through this. I hope that writing about it helped a little.

Elle

I cannot imagine what it must be like for you to be dealing with your daughter, but I have to agree with everyone above...get her help. She can't help what's happening to her and you are not helping her by trying to rationalize her behavior. If she had a broken leg, she would have a cast. If she had cancer, you'd be seeking treatment. SHE NEEDS HELP...get her medical attention.

Annie

You story is so familiar to me. I am also in the Portland area, and my 5-year old daughter has PANs. We had been calling her our OCD child lightly since she was 18 months old. We thought she had peculiarities, and trying behavior, but suddenly one day she obsessively started going to the bathroom to urinate, with obsessive wiping habits because she wasn't dry enough. We are talking 30x per day. Of course we ruled out anything wrong medically with her urinary system. She has similarities with your daughter- the obsessive bedtime ritual, you having to sit in one place where she exactly knows where it is, and not being allowed to say "mmm hmm" as a response. I get it. Oh, I get it. I totally understand the madness this can drive you too.

My daughter is bright, and a do-gooder, and manages to keep it together at school well. Teachers are always shocked when I warn them of her behavior tendencies at home. They don't see it near on the same levels as her parents.

Here are other things she does which may be similar to your daughter:

Avoidance of silence. Constantly talking, singing, clanging, even resorting to making up words to fill the silence.
Baby talk. We are on 2 1/2 years of being a "no baby talk" household. Like that has even helped make a dent.
Obessive questioning, questioning things she already knows the answer to, asking the same question repeatedly even when a sufficient answer is supplied.
Excessive urination/wiping
Sensitivities to most clothing- refusal to wear: jeans, pants with buttons, almost all socks, almost all underwear (only bikini underwear is acceptable), SHOES. Most shoes she can't even handle. Crocs and one pair of Sketchers are the only thing currently acceptable.
Tags. Forget it. All must be cut off.
Extreme freakouts with getting her hair washed or water on her face with bathing. Also, interferes with swimming lessons. This has gotten a bit better with age.
Now recently, obsessive hand washing because she thinks her hands smell bad. This one really is a knife in the heart. We aren't at 30x per day yet. But at least 6 or 7.

My daughter (like her father), has terrible seasonal allergies in the spring/summer. When she was a preschooler she seemed to constantly be sick. 12 colds/year. Easily. Now that she is 5 she seems to have a slightly better immune system, colds don't linger as long. But she has already had two since the beginning of the school year.

When the obsessive urination/wiping emerged we finally took her to the doctor. They ruled out an urinary tract infection, and they put her on Penicillin in case it was PANDAS. It did not change things.

What did help is that I started keeping track of her behaviors. They wax and wane, but never completely go away. She is at her worst 2 days before she gets a virus, and during the course of her virus. Then things slowly are better. I have had a few weeks of no obsessive urinating. Woo! This is more in line with PANS, especially since an rx for Pencillin did not help.

She currently is not seeing a specialist. She has never been formally diagnosed. There is a lot of controversy around PANS/PANDAS but I know it exists. Her pediatrician says at this point she is at the level of cognitive-behavioral therapy, so no official diagnosis is needed. If she worsens to where tics develop, or we don't have periods of symptoms subsiding, the next step is seeing a neurologist and exploring other treatment. I cannot bring myself to medicate her with behavioral drugs, we are not nearly there yet.

I am writing, because I think of your daughter, and I don't want her to be mislabeled inappropriately as OCD. That can stay with her for her lifetime. PANS/PANDAS tends to go away in adulthood. Understanding this disorder has made me a more empathetic parent. My daughter's growing brain is responding inappropriately to immune complexes circulating in her body. I can tell you, no amount of yelling, threats, or punishment will change the OCD behaviors when they are sick.

I hope you are able to find the resources you need. At least know, you are not alone. Many other moms struggle with these same incredibly challenging issues.

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