Support Group

A friend of mine, who is an outstanding Trauma Mama, is starting a support group for Adoptive families on the verge of disruption/dissolution. More information can be found here.

A Pro-Active Therapy Tuesday

I hate Therapy Tuesday. They range from bad to horrible. Rather than waiting to see what goes wrong, I decided today to write about what I am trying to do to improve the outcome.

• I woke the girls early and made it a really slooow morning.
• They are wearing comfortable clothes, my choice.
• After they were done with breakfast, I offered them bananas with chocolate dipping sauce.
• I had them pack their own snacks for the ride to the little city.
• I have GB's iPod and headphones ready.
• Night time medicine and PJs are out.
• I am off to call contractors and get started on getting Hope out of GB's room.

The Beautiful Set of Sky Blue Satin Sheets

The Dad likes satin. Specifically, The Dad likes satin bed sheets. Shortly after Christmas, I ordered a beautiful set of sky blue, satin sheets for our water bed. The timing ensured it was not a Christmas gift, since the Dad and I don't do Christmas gifts. They came, and surprised him, a couple of days ago.


Yesterday, The Dad decided to put the satin sheets on the water bed. Our water bed mattress is old, almost fourteen years old. When The Dad took the boring, non-satin sheets off, the water bed sprung a leak. Our patch kit still had a small amount of patching material in it. The Dad patched the bed and waited for it to dry. We had decided three weeks ago we needed a new mattress, after needing several patches in one weekend. He had the number to call, but hadn't gotten around to it.


After the girls were asleep, The Dad decided the patch was set and the new, satin sheets could be put on. At this point I have my pillow and bolster on the floor and am halfway to dreamland. I have viral pneumonia, and really didn't care where I slept. The Dad had started to put the sheets on when he noticed another tiny leak. He took the last bit of patching material, fixed it, and we waited for that patch to set. I stayed on the floor still dozing on and off.


Sometime later, The Dad put the beautiful sky blue, satin sheets on the bed. I took my last meds of the day, put on my CPAP mask, and crawled into bed. As I am drifting off, I am thinking I wet the bed. I ignored it because that didn't make any sense, I don't wet beds. Through my non-thinking stupor, I realized I was really wet. I took my night gown off, which was dripping, and threw it in the tub. I put a dry nightgown on, started back to bed and realized my sheets were soaked. The Dad jumped out of bed and saw the water running unto the floor. The bed had sprung a different leak.


Fifteen minutes later, with towels and blankets soaking up water everywhere, I found the leak. It didn't look big enough to account for all the water, but that is what we had. What we didn't have was any more patch material. The Dad pitched a fit, which I silently watched. After a while, he realized that maybe he was over reacting and stopped. We (mostly he) brainstormed about what he could use as patching material. The Dad ended up using the vinyl from the zippered bag the beautiful set of sky blue, satin sheets had come in. I would have never thought of this. 


The patch held, and I, personally, was grateful to climb onto old, ripped, cotton sheets that were dry. Two and a half hours of turmoil and Hope peacefully slept through it. There is a message there somewhere, but I am not currently thinking well enough to find it.

Judgement: If Only It Were That Easy...

Being a Trauma Mama is hard. I am 55 years old and I have done some hard things in my life. I live with constant physical pain. I have lost friends to all kinds of cancer. I buried my brother and father within 2 weeks of each other. I nursed my mother for the next eight months and buried her too. I have started over in places where I knew nobody. I know my sister and I have the same genetic disorder that killed my mother. Being a Trauma Mama is the hardest thing I have ever done.


I love my children. It does not make parenting trauma easier. It makes it harder. Not only am I dealing with the fall out of a child who can't change his/her behaviors, but at the same time I am watching someone I love in excruciating pain and I can't stop it.


Most of my family truly don't understand what my children have experienced before I brought them home. They try to be supportive, but their faces give them away. Children who have experienced severe trauma need a parent 24/7. It takes a lot of experience to change the expectations of a child who already knows parents can't be trusted. I give up a lot of "me" time. The Dad and I give up a lot of couple time. My children require that each day be modified so that they can experience success. There are many days where my needs don't hit the radar screen.


I plan time for myself and I plan couple time. Is it enough? No. I am more stressed out then is good for anybody. My marriage is periodically ultra-stressed. I chose this life. The Dad chose this life. We feel called on to help children who have survived things no child should have to survive, heal. We do it with our eyes open and knowing the cost.


It is easy for the outside world to judge us and our children. IRL, people do it all the time. Hope's new school therapist was sure through September, October, and most of November that we were projecting our problems on to Hope. Then Hope's honeymoon with him ended. Neighbors, acquaintances, and even people we considered friends are sure if they took my kid for two weeks, they would have no problems.


Then there is the internet. I blog to share what my life is like, so that other parents on this difficult road know other parents share the same struggles. There are readers who judge me lacking. I am far from perfect, so there are times they are right. Then there are those people (commonly known as trolls) who have never tried to live my live, but spew crap all over me. The worst of them hide behind "Anonymous".
I have had a lot of practice dealing with these people and they rarely get me riled or fuel my self doubts.


It bothers me when trolls and "anonymous" leave comments on other Trauma Mama Blogs and hit them when they are struggling. To all my Trauma Mamas, I want to remind you that people who judge without knowledge, or worse, hide behind "Anonymous" have nothing to give to you. Judgement is never that easy.

*Therapied Out*

Today The Dad and I went for our 4th therapy session with Hope this week. Thankfully, it was better than yesterday. We spoke about "tricks of the trade". The therapist reminded us that when are giving Hope options, to make sure the last option she hears is the option we would like her to choose. He reinforced that triangulation needed to be avoided and it was worth the extra effort. He included the school personnel !  Hope and I were given HW for the week- she has to teach me to dance for five minutes three times this week. I left not feeling like it was a waste of time, but rather *therapied out*.  Thankfully, next week has only two therapy appointments.

View from the School

The Dad and I went and met with the school psychiatrist and the class therapist today. I really didn't want to go, since we already saw the other shrink Monday and had Therapy Tuesday. However, one of the condition of Hope being in the class with so much support is that we meet with the therapist and doctor once a month. Since I haven't met with them since the beginning of November, I felt obligated to force myself today. Doing things you don't want to do exercises your willpower.


They discussed how poorly Hope was doing. I agreed with them. The psychiatrist said Hope's behavior was telling us she is scared... afraid of being abandoned. I waited. I was sure there had to be more coming. I waited some more. That was all he had to offer. I go back tomorrow to have a session with Hope and the therapist (darn, the psychiatrist couldn't make it). I will try to take an open mind with me tomorrow. I don't know if I can do it.

We Set a Record!

Yesterday was Therapy Tuesday. I never like Therapy Tuesdays because they tend to be miserable. Yesterday was by far the worse one I have experienced. 

GB bumped her head, hard, on the car door on our way in. She was instantly convinced I did it and there was no way to convince her otherwise. She has a big knot on her head and would accept no comfort from me. She just cried and insisted it was my fault.

The Dad went back with Hope. During the session, The Dad and the therapist talked about conditions under which it would be productive for The Dad and Hope to go to Texas to visit her first adoptive parents. They had this conversation in front of Hope. All Hope heard was "Daddy is taking me to Texas". She was more hyper than I had ever seen her. 

She never did settle down last night. She was wild and totally out there for the rest of the night... no eye contact, giddy giggling, and total defiance. It was after 11:30 PM before she was still long enough to fall asleep. The Dad didn't miss the State of the Union speech, though. It is good to have priorities.


Hope woke up this morning with great difficulties, still carrying on about her non-existent Texas trip. I feel sorry for Mrs. VY Teacher,

 

Psychiatrist and Hope

Hope and GB had an appointment with the psychiatrist this morning. GB went first and had a normal visit. Then it was Hope's turn. Hope behaved no differently in the doctor's office then she has anywhere else recently. The psychiatrist was very concerned. She mentioned total lack of empathy, dangerous behaviors, and no desire to please anybody at this point. For the first time since Hope came home, the psychiatrist wants her back in two weeks. I am glad she sees what I see- sometimes I worry that I am over reacting. I mentioned this to the doctor and she told me she saw these things during Hope's time in her office. I am also scared. The psychiatrist said our first priority has to be getting Hope into a room, away from GB. I am looking for a contractor to make necessary modifications.

More Success

We used the ace bandage to wrap Hope and her Holter Monitor together. We won't know for sure until later in the week, but I think we have a good shot at success this time. The leads stayed on her even through her tantrums. She did get out of our sight once, and I know she fiddled with it. I am hoping that she didn't erase all the data this time.

Before Hope and Wet Clothes

We had a two hour snow delay the other morning and GB came in to cuddle and talk while Hope was still asleep. We talked about adoption, school, and, rather wistfully, about how life was different since Hope came. Later that day, The Dad complained that he needed 3 or 4 uninterrupted hours for paperwork. This morning, MK and I decided to give it a try. We took both girls and my grandson out and spent a day like we would have, before Hope.


We stopped at a pool store. We bought goggles, a swim sweater (for Mali), and 2 ft rings that hang out under water so you can swim through them. Next stop was the local indoor pool. I focused my attention on GB and we enjoyed ourselves. Hope took Mali's bucket and poured water on my clothes. I briefly interrupted what I was doing, took the bucket and sat Hope down. She had several other chances, but immediately went for the negative attention. MK and I both refused to engage and the other two kids had a great time. 


After swimming, I surprised MK and GB by taking them to a local bakery for lunch. Normally, I consider it and then don't, because Hope always makes a scene and Friendly*s has a better set up for out of control kids. GB remembers having lunch at this place with my mom and was thrilled to be having lunch there.  We focused on enjoying each others company and ignored Hope's antics most of the time.  She  ate her shirt, dropped her food on the floor, one piece at a time. When there was no more waffle left, Hope asked me to get her more to eat. I briefly told her "No, if you were hungry the food wouldn't have ended up on the floor".

We had dessert because that is the best part of eating in a bakery. Hope and GB both picked Big Bird cupcakes. GB enjoyed  every bit of her dessert. Hope played with hers and soon had yellow frosting up her nose, all over her face, and down her shirt. I ignored her until we were ready to go, then cleaned her as best I could with baby wipes.


We stopped at the food store before we went home. I held Hope's hand and kept it under 14 items because I was starting to struggle with my *no response* to Hope's poking.


When we got home, GB was happy and cuddly, and enjoyed telling The Dad all about it. The Dad took Hope upstairs to help her put away her laundry. That lasted less then 10 minutes and Hope was sitting again.


It was tiring, but the feeling of having a great day together, in spite of Hope's sabotage, was worth it. Even if it  meant going to lunch in wet clothes.

Two Hour Delay

We had a little bit of snow last night and, as a result, we have a two hour delay. Hope threw her spoon and crossed her arms during breakfast because The Dad told her she had to leave school early to do the Holter monitor again. Thankfully, this time, she came back quickly. The Dad is out getting the widest ace bandage he can find. After Hope is hooked up, they will wrap the monitor and leads with the ace bandage around her  chest. Maybe we will get some usable data. 

There is an hour before the bus picks them up and I am enjoying a hot cup of tea.

Parental Ambivalence

This is where I am with Hope- parental ambivalence. I feel pulled in so many directions that I think even Gumby would break instead of stretching. There has been so much progress made. The constant, raw terror is gone. Hope has words that she can and sometimes does use to make her needs known. Dinner is not a battle every night. She is sleeping most nights and managing most school days without any psychotropic medication.


And yet... I live in a battle field. Hope lives for the fight. If I won't engage, GB will. GB isn't capable, at this point, of recognizing what problems belong to Hope and leaving them with Hope. Hope misses no opportunity to poke. Her bad feelings are like an oil spill- when she can't contain them, they cover everybody around her and are extraordinarily difficult to clean up. You can never completely undo them.


I am committed to this child. I have break through moments when I feel real love for her. They are fleeting and then the battle field is back. She is still hitting, kicking, and throwing things at me. She is screaming no before I finish my request. She spends all most of her waking hours trying to play The Dad against me.


Hope will be moving into the little room as soon as I find somebody to redo D's room, which is where the office will go. That will give her a place to rage where the only things she can destroy belong to her and it can be made safe enough that a monitor can replace us. GB will get her own space back and her possessions will once again be safe.


Ambivalence... my mom used to say "damned if you do, damned if you don't". Maybe that was just another way of saying the same thing.

NT or Bust?

GB can pass for neuro-typical in some settings, some of the time. As she gets older, there are less settings in which she appears NT, for shorter periods of time. Early Intervention was/is  a lot of the reason GB doesn't constantly stand out as different. I have always considered EI a blessing. I have also always considered being NT the goal. It was my goal for J, MK, and D. It was my goal for GB. It is not my goal for GB any more. I was wrong.

I want GB to be happy. Happiness begins inside. If large parts of her daily existence are focused on changing who she is, she has to feel like what she is isn't good enough. If left to her own devices, GB will wander around singing songs aloud. When she tries to engage other children in play, she uses a movie or a TV show that she has seen- not just as a starting point, but as a script she is unable to deviate from.


GB is most happy when dancing around, singing, or performing a snippet of something she has seen. She has other talents that she is proud of, such as gymnastics and baking, but they are hard for her. They are work. When she was 5 and 6, I liked everything she was doing as long as she wasn't melting down. GB knew it and drew confidence from that knowledge.

GB has lost that confidence and I think, in a large part, I am responsible. In the beginning of the week, GB had a doctor appointment to discuss the rapidly approach of puberty. I was approaching it from the viewpoint of keeping the information developmentally appropriate for GB. GB is almost 9, but functions more like a 6 year old. The doctor laughed and told me not to worry about it because she was sure I would have GB caught up soon.

I have been thinking all week about what the doctor said. Somewhere in the last year, I stopped enjoying GB as she is and started focusing on the future. It is a delicate balance, almost a dance, enjoying who she is today and equipping  her for her future. I haven't done a good job keeping that balance lately. I will be mindful of my real goals for GB.

GB is a beautiful person and I would hate to lose that.

Our First Two Hour Delay

We had our first two hour delay of the school year this morning. Hope woke up with her arms crossed and her attitude on. Every request was met with "no".  A lot of foot stamping, throwing things, and general poking. I am thankful that it is only a two hour delay. In one more hour, they will be one the bus. Until then, I am having a nice cuppa and Hope is sitting next to me.

I am not upset and Hope hasn't drawn me into her game. My moment is okay.

Married Thirty-Five Years

Today is my 35th Anniversary. We got marries on Super Bowl Sunday, in the middle of one of the worse ice storms Long Island has ever seen. We have had over 20 children with special needs in our lives, some temporary, some still here. We have had rocky times and yet we are still here. Marriage is hard work, but I would do it all again.

For today, how GB's coping and Hope is testing don't matter. Today is for us.

Read this

here. I found this link at http://elizabethaquino.blogspot.com. As a mother with a mentally disabled child, my reaction contains words I won't print. As a human being, I am speechless. Any opinions?

This morning's conclusion

• My 29 year old son called yesterday. He was manic and made little sense.
• Hope had a bad day in school, but came home and had a good a good afternoon and evening. 
• GB came off the bus with her lip bleeding. It bled through paper towels, tissues, and a face cloth with ice. By the time it stopped, GB was  on another planet dysregulated... nasty, throwing things, paranoid.
• GB self-regulated by putting her weighted vest on, going to her room and listening to her ipod. When she was regulated, she came down and give individual apologies to each person she had been nasty to, including Hope.
• After she was regulated, GB managed to do her homework without any intervention.
• Hope had a hard morning today... she wouldn't dress until I told her I was driving them to school today and if she wanted to go in her birthday suit, I was okay with that. She didn't know what a birthday suit was, but after I explained she got dressed quickly.
• This morning's conclusion: The most important thing you can teach your child is how to manage their disabilities/mental illness. I wish I had known that when J was growing up.

Response to Anonymous

Yesterday's post on Hope received a comment from Anonymous

Anonymous said...

creativity might help. showing her things in the world that are "forever" because a little person doesnt understand concretely, especially a little person that has been dumped before.

show her how MK was little and now is big with pictures and is still there

show her how the pets do something "naughty" and still stay around

show her how your pool gets dirty or needs new chemicals, but it stays.



and for pete's sake, don't tell her she is bad. use naughty or some other word. Tell her she is NOT BAD.
BAD is internalized in the self. her behaviors are naughty, she is not BAD.

We have shown her MK's baby pictures and pointed out she is still her. We do not tell her she is bad. We say she did not make a good choice and point out what better choices look like. Hope's internalization of "bad" came with her from Texas. All our affirmations are currently falling on deaf ears. The Texas parents said all the same things and gave her away. Hope is doing her best to behave such that she gets sent away. We won't do that. I suspect we will be riding the behaviors out for a while, until Hope reaches the point she develops some consistent feelings of security.

I am not creative- it is not one of my gifts. I am dogged and I don't give up. Sometimes I retreat for a while and regroup, but I don't give up.

I pray  Anonymous is doing well and I appreciate her concern.

Nightmares

Hope has been having nightmares that someone comes and takes her away because she "is bad all the time". We repeat our mantra regularly. "You are ours. No matter what you do, you are ours. You are here forever". Her behavior gets worse instead of better. At this point, we are just hanging on for the ride. Sometimes, there is nothing else to do.

Staying in the Moment

The Director of Education called at eight o'clock this morning to cancel  Hope's Annual Review this morning. All of her classmates did have their Annual Review today, so the class has a substitute. Hope managed to land on the bottom of the behavior ladder. I knew homework with Hope would be a wash tonight and it was. MK and I were cleaning up the  kitchen when the girl's bus pulled in.


Unexpectedly, GB came off the bus in tears.She had extra homework tonight because she had counseling today and missed part of math. This doesn't usually phase GB, but today it did. She cried for almost an hour. I let her try to soothe herself. She couldn't. I cuddled and rocked her and even sang to her and she finally was able to regulate and do her homework. During this period of time, Hope said she needed to use the bathroom and I let her use the downstairs bathroom by herself UNSUPERVISED.


She wasn't out of sight long enough for my internal alarm bells to go off, but I was focused on GB. After GB was regulated and her homework was done, I went to finish the kitchen. The downstairs bathroom is right off the kitchen. Hope had sprayed non-toxic cleaner all over the kitchen. She took the spices MK had out to use for dinner and added them to the animal's water. I honestly do not know what else she got into, because when questioned, Hope denied getting into anything. She started her "poor me" game and I felt the anger rising inside me. I acknowledged that anger. I put her to bed. It was six o'clock.


The Dad undid the damage in the kitchen, and thankfully did not share the details with me. Tomorrow is Therapy Tuesday. Sigh.

GB's Night

GB's gymnastic class put  on a special performance. They did a floor routine created by the dance instructor and a bar routine created by the gymnastic instructor. She wore the new biketard she received for Christmas. MK and the baby came and her grandparents were also there. Everybody was very impressed. GB was in the right spot, focused, and showed off her skills, despite a nervous tummy. Afterwards, we all went to the Chinese buffet for dinner. Hope tried to take the attention away from GB, but The Dad stayed on top of it and made sure GB got to shine.


I am proud of how hard GB works to master new skills!

Therapeutic Parenting

I posted about my recent experience with therapeutic parenting on my other blog.

Failure

Our experience with the Holter Monitor was a failure. Hope spent most of yesterday raging, tear off the leads and throwing the monitor itself. When we finally gave up on the monitor, she started throwing everything she could get her hands on. The Dad ended up with Hope in full restraint multiple times over the day. We will have to try again next week. The Dad is really down that  we were unable to maintain her to complete the test. I am just resigned to having to repeat it.

Yesterday was no fun for GB. Today one of us will take GB swimming and give her one on one time.

Finally, a Holter Monitor

Hope still has an irregular heartbeat. Yesterday we drove to the Middle City to have a 24 hour Holter monitor put on her. She acted extremely young today, did not listen, and tried all sorts of extreme ways (including falling out of the car) to get any kind of attention. It was tiring. And worth it- Hope let them wire her up without any resistance. Now we just have to keep the wires attached for 24 hours. Then, perhaps, we will have some answers.

Puberty and Shopping

GB sat me down for a heart to heart talk over the weekend.


GB: Mom, you know I am growing up, right?

Me: I know that. You can do a lot of things now that you couldn't do before.

GB: That's not what I mean. I mean my body is growing up.

Me: Oh.

GB: I am getting hair down there. (pointing)

Me: That's called pubic hair.

GB: I have hair in my armpits now. I have real breasts growing.

Me: You are growing up.

GB: I NEED real bras.

So GB and I went "real" bra shopping. We went to Penney's and had her measured and fitted. She was a 32A. I remember getting my first bra at thirteen and it was a 32AAA. GB is not nine yet. We bought 7 bras- some white, some tan and three with bright patterns.

On the way home, GB and I discussed the etiquette of wearing a bra, mostly along the lines of if you are old enough to need to wear one, you are old enough not to tell or show people. As we had this conversation, I was wondering how many times I would have to repeat it. This is a child who won't let anyone walk in on her getting dressed, but thinks nothing of walking nude around the house, looking for a particular item of clothing. She still thinks bathroom humor is hysterical. Developmentally, she is somewhere around 5, heading for 6.

I am not ready for puberty yet.

Huh?

Hope's Annual Review is Monday, January 9th. This is the meeting that writes her IEP and determines her placement for September, 2012. Hope has been struggling so much the last month, I can't even begin to wrap my mind around what she will need next week, much less eight months from now.

Non RAD Siblings

Yesterday was Therapy Tuesday. Hope had a tough day at school. We took the girls off the bus and started for the Little City. We planned to eat along the way, but pet groomer called to remind us we had not picked up our two Maine Coon Cats yet. We went to do that and MK drove (by herself) to meet us. We all grabbed something semi-quick to eat, MK took the cats home, and we went to therapy. I went in with Hope first. Monday, after one of her rages, Hope had told me that she hates me because I always hit her. That is a problem because I never hit her. 

I went in with Hope to fill the therapist in on the last two weeks. Hope was very angry at the therapist and started throwing things at her and calling her names. After thirty minutes of no progress, I went back to the waiting room and let them finish the session without me. I easily heard the thumping and door slamming, so I knew nothing had improved. Hope came out and GB went back for her session.

 The Dad tried to do home work with Hope, but she was more interested in getting him angry then doing homework. He told her to let him know when she was ready for home work and started to read his book. Hope kept escalating until she was screaming loud enough to disturb everyone in the building. The Dad took her out to the car.

Towards the end of GB's session, GB asked me to come back with her. We spoke with the therapist about the tough time Hope has been having for weeks. GB told us that when Hope calls me names or tries to hurt me she feels "sick in the stomach". I told I sometimes felt like that, too. We talked a little longer and just before the session ended, the therapist told GB she was proud of how well she was handling herself in the middle of all Hope's chaos.

I hate Tuesdays.

My Favorite Baker

GB received cookbooks from a number of people this Christmas. Each was different and each was met with excitement. GB has used her new cookbooks a couple of times, but today was different. Today, she wanted to do it by herself. She picked out the recipe, made a shopping list, and went shopping with The Dad. She read the directions, did the measuring (I double checked), and made the cakes herself. I insisted on putting the cakes in and out of the oven, but that is the only help she had. She even took these pictures herself. Today, GB is one proud and independent baker!

She even helped clean up with a smile :)

Not -So-Good-Moment with Hope

Hope and GB played nicely for over an hour and a half this morning. I enjoyed admiring their art work and listening to them talk to each other about what they were doing. I told them to clean up for lunch and watched Hope switch to her "I am going to make you miserable" face. I praised her for the good morning she had. Hope escalated while we were eating lunch. Just as she finished her first helping she kicked me. I calmly took her to the mat. She is on it and raging, after first going a couple of rounds with The Dad. The Dad and GB went to WallyWorld to get baking supplies and a laundry basket, MK and Mali are napping, and I am reading blogs, checking FB, and doing email. Nobody is waiting for Hope to stop. A fire and a glass of wine sound really good. The fireplace is right here and I am going to turn it on.

My Word for 2012

Picking a word to focus on in 2012 seemed like a good idea until I tried to decide what *the* word would be. I need a word that will encompass our struggles, allow for hope, and celebrate our victories. I want room for doubt, room to wonder, room to vent. I want to be able to share our problems and our solutions. I have been struggling for a couple of days because no one word seem to fit.

Yesterday I realized I  was looking at it wrong.  What I really needed was a perspective to filter my life through this year. Once I thought of it that way, *the* word was obvious. My word for this year is *moment*.

I wish to examine and live my year in one *moment* pieces. The present moment, whatever that may be. I don't want to be waiting for the end of the tantrum. I don't want to miss the smile while dancing for the pure joy of it. I want to be fully present when she reads a book she was unable to read before and celebrate  the accomplishment. I want to hear my daughter the first time she tries to point out the wonder she has found. I don't want to live 2012 multitasking and missing so much of what is important.

For 2012, I would like to blog about moments. It will be interesting to see what that looks like. Happy New Year!