Total Anxiety

Last night I was quilting away, enjoying the peace and quiet in the house accompanied by the hum of my sewing machine. I wasn't thinking about anything beyond making straight lines and then BLAM! Panic attack. Not a full blown freak-out-OMG-I'm-gonna-die attack, just the sweaty-palms-swimmy-head-heart-beating-faster kind.

Because it hit me like a flash that I had been enjoying my time to myself a lot lately, my late night revelries in personal pursuits becoming a norm instead of an occassional treat I eventually found time to indulge in. This new found time to indulge and take care of me is because Sissy is at the RTC. Sissy's needs were so demanding I couldn't breathe, or think, or live or laugh or love or do anything of life sustaining value. Life was Sissy Sissy Sissy Sissy Sissy... and I can't go back to that. I have to take control of that but I still feel so powerless.

So I panicked. Sissy's dysfunction still has that much hold on me and I'm struggling to really let it go and relax and enjoy and not look over my shoulder every other second, anticipating another one of Sissy's catachlismic meltdowns. I panicked because I don't really feel confident to turn the tide when she comes home. I've been so busy enjoying all of the things about life that I couldn't do because of Sissy's demanding needs that I haven't strategized a way to prevent her from becoming that all-consuming driving force in our family life again. My breath was gone, I paused the sewing, I gathered my wits so I didn't fall apart into a crying or hysterical heap, and I centered my thoughts. I can do this. I can enjoy this moment and not let Sissy steal it when she's not even here. Sissy's not returning for awhile yet. I have time to read some more, I have time to plan, it'll be fine. Then I resumed my sewing after I wiped a few tears and eventually went to bed, but reluctantly. (Sewing is so much fun!)

Then this morning, just after I got out of the shower, it happened again. I thought I heard Sissy screaming the way she always does every morning about whatever it is she would scream about (sometimes we joked and said she was screaming BECAUSE it was morning). And in that split second before I could remind myself that Sissy was at the RTC and most definitely NOT at the house and that it was just my mind playing tricks on me, I lost my breath and the sweaty palms and the racing heart started again. I can do this. I can enjoy a shower without racing to get out before Sissy tears down the house. Sissy's not here, she won't be returning for awhile. I have time to read some more, I have time to plan, it'll be fine. Then I wiped a few tears and opened the bathroom door bravely.

I told The Dad all of this. He understands. He is a little nervous too. We get to see her on Monday to take her out for her birthday and if I see her therapist, I think I might take a second to tell her how things are going for us at home. "Better," I'll say. "We're laughing and having fun and coping but..." I'll add carefully, "I think we might all be suffering a little post traumatic stress." How else can these errant panic attacks be explained? It still amazes me, almost makes me cry, when I hear us laughing as a family, cutting up and having fun, tickling, giggling, enjoying each other because I know that none of that was possible while Sissy was in the house.

I want her back, don't get me wrong. I'm not emotionally detaching from my child. I'm just coming to grips with just how critical and chaotic it was with her at home. Some how, some way, we must recover and be prepared for her return. But if I think about that too much right now, I'll start another attack so Ill leave it alone and go to bed.

Anyone else have these types of issues while your RADish was at RTC? What types of things did your family do to recover and get ready for the RADish's eventual return to family life? Right now, I'm feeling like reintegration will never be possible and I could really use some help.

why I was up until 2 am Christmas morning

I was up late finishing this dolly sweater for Wonder Girl. Totally worth it! It's so cute.

Hrm...

Visit with Sissy was good. No. It was great. It was the first time all five of us were together in a "normal" setting. We took Sissy off campus for a trip to McDonald's and to open her Christmas gifts from us. I had a slight twinge of guilt about her presents, only one toy in the mix BUT my careful shopping meant that everything we gave her was permissable at the RTC. New clothes, lots of hygeine items, a book, some markers, that kind of stuff. She has a small locker to keep extra things and is allowed 5 personal items at a time in her room so we were really limited by what we could give her. The no batteries, no hard plastics, no metals rule is harder to follow than you might think!

Before our TL (therapeutic leave) we had a therapy session to talk about coping skills. Sissy brought some coping skill tools with her on our outing - her anger ball, some markers and a coloring book and a small lovvie. She had a few moments when her anger got the better of her but overall, she managed very well. I can definitely see that it will take lots of practice before she will be able to function in the normal home environment, especially since she'll have to come to terms with the fact that Wonder Girl is techinically emotionally and mentally more mature than her at this point and that Aspie Boy will never be anything other than what he is (most of Sissy's trouble spots yesterday revolved around Aspie Boy and her inability to process HIS needs). The Dad and I have said it a thousand times, we'd gladly take 1000 more of Aspie Boy over Sissy's unique mental health issues. Aspie Boy is that much easier to manage but Sissy apparently doesn't understand that his special needs are not an issue, we just keep rolling along.

So the Hrm...
The therapist told me that they did and EKG and will be doing another EEG (gosh, I REALLY thought those things were the same ... must do some wiki searching later) because the staff are puzzled about Sissy's very flat affect and lack of emotional processing. I still say HELLO!!! RADs YOU NINNY'S!!! but they are still thinking spectral disorder. I just can't see it.

Aspie Boy's needs are so very, very different than Sissy's. I can't possibly imagine that Sissy is on the spectrum. I've taught spectral kids. I have friends with spectral kids. We've tested Sissy for spectral disorders. I just can't see it. Still, the RTC staff wants to test her and rule it out. I'll be helping the cause a little by providing the results of Sissy's sleep-deprived EEG that we did in September (results were inconclusive showing one diffuse spike of uncertain significance - possible seizure type activity from the Wellbutrin???? we don't know) I'm hoping the EEG results i provide will serve as a baseline for diagnostics. Seriously. If they diagnose Sissy as a spectral child I will instantly become one of those Lifetime Movie moms that "lives in denial" about her child's diagnosis. I just can't see it. To me, it's RADs. Furthermore, Aspie Boy never needed an EEG to prove his spectral disorder (neither have any of the other spectral kids I know/have known) so that's just a weird diagnostic tool to me. Argh.

OK. Enough angst. I am saving my energy for fun for the holidays.
xxoo to everyone and Merry Christmas!

WOW!

Tonight was our phonecall night. 10 minutes some time between 6-8.

At first, phone calls with Sissy were tough. Until her placement, she staunchly refused to use the telephone. Lots of irrational phobia stuff going on there. But being away from us and in a strange environment for the first time ever, the phone became a must-conquer-this-fear issue.

Then they changed her meds last Monday.

OMG! You can HEAR her smile. Wow. She hasn't sounded this good in nearly a year. And that's talking to her on the phone! She asked me if I would please bring her two different lovvies to snuggle with and then told me she would have to miss her group outing tomorrow. The kids are going ice skating but they won't be back before our visit.

I expressed my regrets that I scheduled our therapy during an outing. I had to do that once before, keeping her from equine therapy. But Sissy said, "It's OK. I know that visiting with you is more important."

WHAT?!?! HOLD THE PHONE! DID SISSY JUST SAY THAT!?!?!?!

I wasn't sure if I should jump or cry or shout or WOW. Just wow. So I went for Nancy Thomas style pizazz with lots and lots and lots of very direct verbal positives and I tripped over my words because, WOW! HOLY CRAP! That was amazing.

Maybe it's the meds. Maybe it's time away and evaluating the choices she made that resulted in a placement, choices she can change. Maybe she's parrotting rhetoric (I don't think so.) I don't care. That was the most amazing thing she has ever said to me. Tomorrow she will be getting an enormous hug from me. I just might squeeze the stuffing out of her!

Absolutely best christmas present I'll be getting this year.
:) :) :) :)

awesome church

Our church has been amazing. More specifically, our sunday school class. In the past few months our church and sunday school class have provided:

1. partial payment for all of my pastoral counseling appointments
2. a prepaid grocery card
3. a new oven (our old one hadn't been properly working in nearly 2 years)
4. a new furnace (we hadn't had central heating in 5 years)
5. walmart gift card for a considerable amount (more groceries and supplies for Sissy's RTC needs)
6. christmas shopping money
7. a bunch of McDonald's gift cards and gas money to help offset our traveling expenses to and from Sissy's RTC
8. when weather and time permits, the church will be replacing rotting soffet, trim and clapboard on the house
and non church related assistance:
9. my school also gave us a Walmart gift card (I have a new winter jacket!)

There was an article in our paper about a local family that has a severely and profoundly handicapped child and the dad is about to be deployed. The community is raising money to help the family purchase a wheel-chair accessible van before the dad goes to Iraq. The mom was quoted in the article as saying that she believed God put her on the earth to be the parent of her special needs son.

That's a better woman than me! I went into adoption for strictly selfish reasons, I wanted to parent. I had NO idea how hard it would be or that I would end up with two children with needs. I've really struggled with it and am mostly on the other side of the fence in which I can say that I feel that ultimately being a parent of special needs kids is the path I was intended to be on in this life. But that I was put on the earth for the sole purpose of adopting and parenting SpEd kids? Not so much. I have so much more to offer this life.

Like with church. I continue to feel so overwhelmed by the generosity of our congregation but am equally amazed by the verbal praise we receive. Instead of being blessed, our family's story and our positive attitude is blessing THEM! It's reciprocity at it's best and I for one am not going to turn it away. Our family can use all the help we can get. I quit my job because it was too hard to manage Sissy's critical needs and Aspie Boy's needs. In addition, Wonder Girl has needed a lot of TLC and repairitive work to help her feel safe and confident again. (I am glad to report that Wonder Girl has been sleeping in her room without any issues for 3 weeks!!!)

I hope the family in the article is able to get their van before the Dad deploys. I know that it will happen because there are so many generous people in our community that are all to glad to lend a helping hand where it's needed, our family is proof of that. I just hope that some day I can be on the giving end instead of the receiving end but right now that seems improbable. I think our family will be in a perpetual state of need given our children's issues. As I told Sissy's therapist, "we have opted to live as hovels for the benefit of our children." But for this holiday season, unemployed, recovering from nearly two years of Sissy's chaos and balancing the checkbook to discover that because of the help from so many generous, empathetic people, we have a little bit of hope. To God be all the Glory.

Merry Christmas to you and your family. I hope that your life story is the same this holiday.

some help

I'm reading an insane amount of literature in a very short period of time so I will be adequately prepared to help Sissy when she returns. (ETA is late March - insurance only gives us 120 days wether she's better or not) That means I have to be better. nice.

One of the many texts I'm reading address an issue we seem to be having while trying to help people understand what is happening with our family. It seems that despite our best efforts, our communication is still generating confusion, hurt feelings and misunderstandings. That's not our intent but we are also having problems helping people understand that our intent is not to be hurtful, rather to be 100% invested in our family's needs right now which includes Wonder Girl and Aspie Boy (who has his own set of unique issues) and me and The Dad. It is so easy for parents to overlook themselves but we must.be.first! Always!!!! If something will be an energy drain for The Dad and I, we can.not.do.it. We have to save ALL of our energy reserves for the children and we need to store up insane amounts for Sissy's return. She's going to drain our energy account when she returns and we know that so we have to be prepared with a very full energy account.

Somehow, even typing all of that I know that those words will be lost on our loved ones that aren't walking these miles in our shoes. Despite my best efforts to hone my communication skills, I still feel helpless to express what we need. The Dad said it so perfectly the other day, i wrote it on the white board in the kitchen and have yet to erase it, "We need people to have compassion and empathy even if they don't understand." Well said, Dad!!! xxooxxoo to my excellent spouse.

I was also trying to figure out what it is about The Dad's mom that makes my heart sing instead of turn sour and it's that "she makes no demands of us and trusts us implicitly."

Here's the cruxt of the matter, as parents, we are not doing anything illegal, immoral or abusive to our children. Indeed, those things have already been done to RAD kids. On the contrary, we are doing everything possible to HELP our children. Sure, the help our children need requires unconventional methods but why does that matter if in the long run we have safe, happy, healthy, mentally stable children that eventually become functional adults in society? The end justifies the means and furthermore, I'm not questioning anyone else's parenting skills (provided that they are not doing anything immoral, illegal or abusive.)

Then I read this passage in Katharine Leslie's book, "Coming to Grips with Attachment" (pg 130) I do not know that we can ever hope to have the complete support of people who do not live with an attachment-challenged child. I've gotten over t. I say to my friends and family, "You can feel bad for our children, but I hope you also feel bad for me and my spouse." I explain to them that even though what we are doing may not feel right to them, it is right. And if they can not stick with the plan we won't be able to spend much time together. A lot of parents tell me that even though their family and friends think they are not parenting their attachment-challenged children properly, these smae fmily members and friends are not interested in giving it a try when offered the chance."

[aside: Leslie recommends Dan Hughes' book, "Building the Bonds of Attachment" to help address the challenges famiily and friends pose to us and how to mange these problems. If anyone has this book and would be willing to loan it (I'll pay S&H) please let me know!]

To conclude, the part where Leslie says, "and if they can not stick with the plan we won't be able to spend much time together" really resonates with me. Not because i'm being a meany but because it gives me the freedom and the guilt-free privelege to say that unsupportive responses will drain my energy account and Sissy needs a lot of my energy. I also need to take it one step further and say that if they can not be 100% verbally supportive, I will have to choose the same recourse. That includes no unreasonable requests of our time and energy (it's not like we haven't spelled it out for everyone that Aspie Boy and Sissy can not do conventional things that healthy children of their age can do), no anger, no sighs of discontent or looks of disdain or disapproval and no demands of explanations (I'll just angrily shove a list of books under your nose). All of those things drain my energy account and for mine and Sissy's sake, I can not abide by it any more. Even if that means I'll be stepping on toes and causing other people pain. It's not intentional, it's survival for our family. We are simply taking an unconventional path toward healing for our family that is not illegal, immoral or abusive. I make no further apologies or exceptions.

Lastly, for my readers that are not RAD parents, it might be best to say to you that if you are going to try to figure out RADs, don't. The very nature of this disorder is mental disparity and even insanity. That which is unexplainable or incomprehensible to a sane mind simply can not be explained or rationalized, it is futile to try. The best a RAD parent can do is attempt to rewire the RAD brain with paterning, modeling, love and any unconventional or insane tool at our disposal. The best a RAD parent can do to survive this insanity is to laugh, hug and be reminded 12 times a day that they are amazing, wonderful, beautiful people that did nothing to earn their child's hate and malice or the disdain from the friends and family that do not understand.

Peace.

more RAD questions for Awesome RAD moms

Seems the more I read, the more questions I have. I REALLY wish our region had better mental health support and services, particularly in the form of RAD help. We have 3, THREE certified RAD therapists in our area of 350,000 + people and a strong adoption/biological children ratio. (Blame the Bible belt, high incidence of infertility and affluence)

Thanks to all that replied about the spectral diagnoses our RADishes get, even when it's not clear if it's the RADs or genuine developmental delay. Sissy is also diagnosed with bipolar so tossing Asperger's or PDD-NOS into the mix when all of it can clinically be explained by her RADs diagnosis makes me very leary of adding one more thing to her growing list.

Question #1
Nancy Thomas is a strong proponent of sugar = love. She cites several examples of giving sugar as therapy to RADishes and seeing very positive results. For example, she uses the milk caramels in snuggle therapy to mimic the breastfeeding bonding RADishes didn't get. She also explains about one particular RADish she had that responded very well to ice cream therapy, saying that in three weeks time, he said he'd had enough and afterward, he no longer abused sugary treats priveleges. There is also clinical proof of crack babies needing the sweet to repair brain damage. Thomas cites RADs development impairment to be similar to crack babies. Finally, Thomas says that which we take away, our children will reach for. Her example is that with her biological son was not given guns or sugar and he is now a marine that has very specific habits about his sugar consumption as an adult. Even in my own husband I've seen this issue. His father was a severe diabetic that held the principle that if he couldn't eat it, no one in the family could either. The result is that my husband has a VERY STRONG procilvity toward sweets and he'll readily tell you that he knows he's compensating for that which he did not get as a child.

Katherine Leslie has an exact opposite approach. In her book "coming to grips with attachment" (pg 78) she says "Sugar addiction is pretty typical of traumatized children. I locked all the sugar stuff in a tackle box and attached a combination lock. Only my son adn I have the combination because we are the only ones in the family who can control ourselves. All sweets must now pass through me. This ended up helping our whole family control their sweet teeth."

I know many RADishes have a hoarding issue. Sissy likes to hide food but she never actually consumes it. She is challenging at mealtime in the sense that she'll often refuse to eat (even throw away an entire plate of uneaten food) or she'll consume too much and I'll have to rehearse portion control with her. But my "the kitchen is closed, it is not food time" rule seems to help minimize her eating dysfunctions. But perhaps Leslie's approach is more affective for severe hoarders?

I was wondering which approach you subscribe to when it comes to sugar - Thomas' or Leslie's? If you've tried both, which has been the most successful? If you have more than one RADish, have you used different techinques depending on the child's needs? Has your approach been largely based on clinical evidence or your personal ability to enforce a rule YOU can live with? (because we all know as RAD moms, if we can't live with the rule or the child's consequence for breaking the rule, it's a lost battle before we've even gone to war)

Question #2 - Has being a RAD mom made you harder/cynical or have you managed to stay true to yourself in the midst of the mayhem? I ask because my counselor and I had this discussion this past week in my session with her. I was explaining my frustration with Sissy's therapist at the RTC, my reason being that the therapist was allowing Sissy to triangulate us, that I felt the therapist was too weak and allowed herself to be vulnerable to Sissy's charms and lies and that I felt vulnerable as the parent. My counselor asked me the question, "what is the therapist like as a person?" I explained that she's very soft, wears soft, comfotable clothing in subdued colors, had soft flowing hair in a pale blonde with light curls, she had very fair skin and a quiet, slow, almost child-like voice. I ended my decription with, "she comes across as a pushover which is counterproductive to heal a RAD kid!"

But as my counselor and I wend our way through my other needs, we came back to the issue of "soft is lacking in my life" partly due to the fact that I've had to be so cut and dry with Sissy, to the detriment of who I am naturally. If Sissy wasn't a RADish, would I be a more soft, gentle mom? Would my personal attributes be more like this therapist that frustrates me? Is my frustration with the therapist exacerbated by my inner struggle to be me despite Sissy's RADs? Reading and listening to all of this RAD material, I feel myself needing to be more staunch and less soft but it feels counterproductive to eventually seeking attachment with a traumatized child. If Sissy were an infant, I wouldn't be playing chess in my head all day long, thinking six moves ahead of her. I'd just be snuggling her and loving her, cooing at her, humming, rocking, rubbing, tickling, etc. I'd be "soft".

How about you? Have you found a balance and if so, how? Or have you found yourself in my position - a hardened, cynical mom that is currently struggling with my choice to parent because I didn't know how hard it would be to help a RADish recover, to be true to myself, to love despite the enormous deficits Sissy has created in my love bucket, to know that there is a clear reality that despite my best efforts, ultimately healing is up to Sissy and she may not choose it. Can I live with that reality and not take it as a personal affront to my role as her parent? Is it easier to be hard now, preparing myself for a possible reality to soften the blow for later? Or do we have to make ourselves hard to love these RADishes so they have a better chance at healing?

Oh, it's all so hard. I'm glad for my counselor. I highly recommend you get your own therapy. RADs is hard on the moms, maybe harder than it is on the kids.

Question #3 - How involved is your spouse/significant other in the RAD therapy at home? Are you a team or is the one parent the RAD "mom" and the other the co-parent that simply supports? Thus far, my husband is not actively participating in reading/learning about RADs although he is highly supportive. How necessary is it for both of us to be completely in the know about all the therapy techniques if The Dad simply supports The Mom in her therapy approaches for the RADish? In other words, The Mom institutes all the necessary therapy and The Dad supports The Mom and helps with the non-RAD siblings?

OK, finishing this rather heavy post with a funny. I heard this song on the radio and I imagined a bunch of RAD moms confidently walking side-by-side in slow motion down a busy street crowded with screaming RADishes in active defiance, the wind whipping the moms' hair but they had smiles on their faces and expressions of being all-knowing and all-powerful (perhaps this is a RADish's nightmare? lol) The lyrics of the song are very fitting for parenting our RADishes!
I give you, "running with the devil" by Van Halen
http://www.youtube.com/watch?v=73sKNUa4M-E