August 15 – Things are relatively calm as summer break comes to an end

‘No news is good news’ is my mantra and that certainly applies to Ana for the past couple weeks. Her new medication cocktail seems to be lowering her agitation. In fact, she hasn’t self-injured in FOUR DAYS!!! She returns to school next week and is excited. We are wrapping things up here for summer break and everything seems to be going well.

Tomorrow we are doing fun family stuff all day and already she is out of sorts. My parents are in town for the festivities and that is throwing her for a loop. In a 24 hour period she will be seeing grandparents, both sets of aunt and uncles and cousins, riding rides, and eating at her favorite restaurant. That might be too much but we will see. We have contingency plans in place for every step.

This week I had a little pity party for myself. For no good reason at all I took a look at my life versus the lives of other people with ‘normal’ kids and man! do they look different. And I felt angry. And sad. And depressed. For a few days I felt like throwing in the towel. I mean, am I actually accomplishing anything? Can Ana actually be saved at all or is she already broken?

Then after a heart to heart with myself and God I realized that a loooong time ago I asked God for wisdom and to use me to do something big (and I emphasized BIG). So, he gave me Ana. And Drew. And Grace. And Hannah and Grace mixed in just for fun. I don’t know anything harder or bigger or requiring more wisdom than raising this crew. So, I figured when I’m feeling all pithy, I should really be thanking God for giving me what I want and having enough faith in me to do the job right.

(Then that makes me think about the omniscient powers of God and that he knows all things before they happen and that he planned for me to have the kids because he already knew the outcome ((which I don’t I might add)) and all that just makes my head hurt so I quit thinking)

In the end, I say ‘Thank you, God, for all you give me’ and go to sleep.

Tomorrow is another day. And next week begins another school year. I need to enjoy the peace for the time being.

July 2 – Another option possibly?

Ana’s therapist recently told us about a residential facility in New Mexico, Villa Santa Maria, that specializes in attachment disorders. I spoke to the director about Ana’s situation he seemed optimistic that he could help us.

What a relief!

Now I get to fight the Medicaid battle to get them to pay for it cause Lord knows we can’t afford $400/day!

I really hope we can get this for Ana. I would like her to try this center out before we get to a point where she has to leave our house for everyone’s safety. If she goes to this center and she still cannot live with us at least I will have known that we tried everything.

I am leaving this in the Lord’s hands. I know he will open the necessary doors for this to work if it is in His plan.

Please pray for us and for Ana.

June 25 – Even our therapist is depressed

We just survived vacation. Ana is home for the summer along with her four siblings. Life is challenging to say the least.

The past few days have been very hard for me because of Ana’s CONSTANT behaviors. Nothing she is doing is exceptionally bad or destructive, just constant. With nothing to focus on (like school or a hobby) she spends all of her time annoying people. Being the fine RAD specimen that she is she also takes opportunities to  increase the chaos when another child has a bad moment.

I am at the end of my rope. Yesterday we went to her weekly therapist appointment and the therapist acknowledged my feelings, repeatedly told me she believed me (most people don’t), and agreed that there are not many options for Ana. And the few options that are available are grim.

Option 1 – We keep on keeping on

Positives: Ana stays home and continues to build attachments to our family and community

Negatives: Ana stays home and continues to annoy everyone and holds our family prisoner to her behaviors. My marriage deteriorates. My children don’t want to be here.

Option 2 – Ana is placed in a residential facility

Positives: Our family is free from the reign of Ana

Negatives: The only residential centers that will take Ana with her physical disabilities and non-verbal status would crush her soul and leave her a rocking/stemming shell of a child, most likely permanently eradicating any hope of her success as a human being.

Option 3 – Someone qualified to work with Ana appears

Positives: Ana could get the one-on-one she desperately desires. I am freed up to tend to my other children’s needs.

Negatives: We’ve tried for four years to find such a person with no luck. None. Only God could send this person, most likely floating down from the sky by umbrella.

As you can see, the summer is not looking all that good for us. I really get by hour by hour. I am incredibly grateful for the good hours and pray for endurance for the bad ones.

We changed her meds a little bit to see if we can attack the problem from that angle. Hopefully, we’ll get a little relief.

Only 8 more weeks till school is back in session. God grant me the strength….`

 

June 6 – Ana upped the ante

torez special needs orphanage

For the past four months Ana has been going to her dad’s house – with Drew – every other weekend. Every trip Ana ups the ante a little in a classic RAD game called “Will You Still Love me If I….?” Every trip has resulted in a more frustrated and more angry dad. Even though it probably doesn’t help I tell him after he tells me all that Ana did while at his house, “Well, next time it will be worse.”

This past trip Ana really outdid herself. According to dad, while enjoying a relaxing day in the backyard, grilling, catching some rays – out of the blue – Ana busted her head through their back door.

Hold. The. Phone.

She what?

Yep, busted out the back door. And this was a very old door attached to a very old house meaning this was some heavy duty, thick glass. The end result was an Ana emergency room visit, five stitches in her ear, and an a phone call to me.

After the emergency passed and the blood was cleaned up their dad called me to tell me she needed to leave. Like now. I told him no. That didn’t go over very well. I explained the emergency was over. She was stitched up and there was no reason to cut the visit short. In fact, the best thing for them to do was to get back on the routine as quickly as possible. That REALLY did not go over well!

I was told the incident was my fault (totally, 100%, in no uncertain terms), I ruined her (by doping her up with the wrong drugs), I ruined Drew (ditto on the doping up), she was never coming back to his house, she needed to be institutionalized, and I was an awful person (okay, he didn’t say that but he might as well have).

My response was my beginning-to-get-old spiel with the high points of 1) I cannot control her behavior when she is at his house – that is his responsibility, 2) Doctors are yet to give me script writing privileges seeing as I’m not a doctor or even an NP, 3) He is fifty years too late for the whole institution quick-fix, and 4) Most people think I’m a nice, good person including the doctors HE HAS NEVER TALKED TO OR VISITED.

Unfortunately, his colorfully worded diatribe was witnessed by both Drew and Ana as he chose to yell at me on the phone in his living room. Ana is more angry (if that is even possible) at her dad and Drew has announced that he will not be getting him a Father’s Day gift. Neither child appreciates it when their dad cusses out mommy.

*Funny side note – Drew told me after he got home that I should hang up the phone when daddy starts calling me names. I responded that daddy doesn’t call me names because if he did I most definitely would hang up the phone (those boundaries have already been established). Drew’s response after a few seconds of deep thought? “Oh, I guess he called you all that stuff after he got off the phone.”

And the beat goes on.

Finally, though, I am making a legal attempt to stop this nonsensical cycle and am start the wheels moving to amend visitation and custody. Dad says he and the kids’ stepmom will see a family therapist so that they can be coached in parenting techniques specific to RAD. I am not holding my breath, though I do believe God can do anything – even help my ex-husband.

Even though I stand firmly behind my belief that Ana did not intend to bust their door and go get stitches, she did succeed in pushing a lot of her dad’s and stepmom’s buttons and cause LOTS of drama. That is a RAD kids’ special power. We have spent the last week trying to minimize the incident and go back to life as normal as possible.

May 17 – Funny Ana!

Ana comes home from school everyday with a sheet that says what she did that day and how her behavior was. Well, since her behavior has not been very good lately her teacher has chosen to leave that part of the sheet blank and just walk her out to me – personally – to share the day’s trials and tribulations.

Ana is responsible for filling out everything but the behavior section of the sheet. Since her teacher is no longer filling out the bottom portion Ana circles what she did that day and puts it directly in her folder to take home.

The other day, a particularly bad day for Ana, her teacher noticed Ana writing something on the sheet of paper so after Ana put her paper in the folder her teacher took a look to see what it said.

After bringing Ana out to the car and going over her antics for the day she said, “Make sure and read what Ana wrote on her daily sheet.”

Very curious to see what Ana wrote since she NEVER writes anything voluntarily besides her name, I pulled her daily sheet out. There at the bottom very neatly written was “Ana good.”

Nice try, Ana.

 

May 7 – And the rage goes on…

Our Family 2014

I’ve been restraining Ana for the last hour. She had a great day at school, but lost it at home. She is angry and frustrated…over nothing. She is being defiant and self-injurious. She is trying to hurt me and destroy property. She is just one very angry little girl. As I’m typing she’s throwing her body around on the couch screaming (now she is reading over my shoulder).

I’ve actually been able to go a few days without restraining her. Of course, she has been a holy terror at school and then comes home and chills.

The school year is ending and that means a lot of change. I know that is part of her problem. She does not like change. The school will not approve year-round school for her.

I still have no plans for her for summer. I will be having two people help me every day but that doesn’t guarantee a happy Ana. Not one single bit. I’m going to try and stick to a pretty rigid schedule so she can get in a routine, but things like vacations and visits to Grandma’s interrupt that routine. There are no day camps that will accept her behaviors. There is no person who can take her.

So, for today I’m putting all my chores and cooking on hold to keep her safe (and my house). Maybe she’ll help me cook and that will distract her from her raging. Probably not, but I can hope, right?

April 22 – I think I’m starting to GET Ana

Ana’s 11th bday

Sorry I’ve been incommunicado for the last few weeks. It didn’t have much to do with Ana; life just got crazy. Ana is still Ana. She is still raging daily, laughing uncontrollably, wanting desperately for our attention and doing horrendous things at dad’s and school. What has changed is me a little. I’ve always accepted Ana for who she is but for the last month or so I’ve been trying to get inside her little head some more.

It also helps that I have Baby Gabriel in the house. He and Ana are at about the same place emotionally speaking (developmentally). I remind myself hourly that Ana’s acting out for my attention is no different than Gabriel’s random crying for me to pick him up for a snuggle. It’s just that when Gabriel does it no walls are damaged and he is super darn cute. But that is not Ana’s fault. Entirely.

We celebrated Ana’s 11th birthday recently. Knowing her tendency to sabotage good times we didn’t tell her when she was having her out-to-eat birthday dinner (2 nights before her birthday) and simply surprised her with a sombrero and “Feliz Cupleanos”. I wish I could have caught her on camera. She was genuinely happy – huge smile, laughing, loving her life. That is such a rare sight!

On her actual birthday we don’t make a big fuss about it because of her discomfort with such ooey-gooey feelings. I called her teacher around 9am to give her that advice but it was too late. They had made a big deal about her birthday and paid dearly for it. After my phone call they nixed the birthday talk and she calmed down.

Once home from school I made her favorite dinner (I didn’t ask her what she wanted. I just made it) and cupcakes. We have a birthday routine in our house and Ana is comfortable with it. Nothing too big or too fancy. But very comfortable for Ana which is the goal.

Other than that I’ve been trying to see Ana’s behaviors less about combativeness and more about being in the moment and lacking self-control. Yes, she is manipulative. Yes, she loves to spread her misery, but most of the time she takes advantage of what is happening in the moment to express herself.  Kind of like Baby Gabriel does….

So the end result is less time away for Ana and more time with mommy doing chores. She dislikes the chores but she calms down quicker when she is in the room with me, so I’ll take that as a win-win.

March 29 – Classic RAD Behaviors: Predictable, but Still Not Fun

For the most part the past two weeks have been ordinary (as ordinary as it gets for Ana). She did pull two classic RAD moves, though, that I think are worth noting.

First, I decided it was time to finally put up the wall stickers she got for Christmas. I had been waiting for a relatively stable time so she wouldn’t immediately rip them down. I thought a calm Tuesday afternoon was the perfect time.

These stickers are totally Ana! They are neon paisley peace signs – very teen looking, which is what Ana is all about these days.

We went down to her bedroom and she was excited. I let her pick where on the wall to put the stickers and then I put them up for her. The first one went great. All smiles and giggles.

Then the evil RAD monster came into the room. Like a switch Ana began screaming, kicking her pillows and bed, hitting herself and reacting in pure rage.

Now, the typical person would have reacted with anger, saying something like this, “Why are you so upset? There is nothing to be upset about. I bought these expensive stickers for you and this is how you act?? See if I ever get you nice things again!” and then hey would leave the room angry.

But, understanding RAD, I didn’t say this but instead continued on as if nothing was wrong. I kept my attitude nice and happy and didn’t make a big deal over her behavior. And I’m happy to report the stickers are still up!

Why did she do this? My best guess is because it made her REALLY happy and she felt all loved when I began putting up HER stickers in HER room. Her pervasive shame does not allow for those feelings, so she resorted to what is allowed – anger. I wish I understood more of why RAD brains do that, but sadly I don’t.

I pull a lot of my reactions from the book, Building the Bonds of Attachment, and that’s how I tried to model my behavior in this episode. I think it worked.

Her second classic RAD moment was when my husband and I went on a date and left her and her siblings with a sitter. Ana HATES when we go on a date. She wants to go with us. So, since she can’t go with us, she pulls out her best stuff for the sitter guaranteeing a frantic call to me mid-dinner that (hopefully) will bring us back home.

This time, she got naked and trashed the storage room in the basement.  We got the call 20 minutes into dinner. I told the sitter to go ahead and give her the sleepy pills and hold her (if needed) for 20 minutes until they kicked in.

I felt bad for the sitter (even though she is trained to handle Ana and her pay DEFINITELY reflects that), but I couldn’t let Ana win that one.

After dinner we did come home for a minute before moving on to our next activity. We pretended like we forgot something. Ana was already in bed so we left well enough alone.

Why does she behave like this?  I figure it’s part separation anxiety (she has bonded with me but we haven’t moved much further than about the 10 month stage developmentally) and part ‘if I don’t get my way, you’ll pay’ which Ana is famous for.

All we can do is continue living our lives showing Ana that even though her feelings might propel her to behave atrociously, we still love her and will always come home to her at the end of the night.

Have any of you found ways to lesson the stress of sitter nights? We typically don’t go out when she is with us because of this. You don’t want to know how many sitters we have gone through!

March 17 – Realization – Ana lives in the moment

Tajik orphans

This past weekend we visited family and had a four hour car ride to get there. Just me and five kids in my van for a VERY long time. This long car ride took place after a day at school to top it off. You can surely imagine the mood Ana was in.

To be honest, it started off well mainly because Ana was really excited about going. She loves visiting her grandparents! We have a standing rule now in the van that she is free to make her noises but only outside. That means if she begins the noises I pull over and let her out of the van to get the noises out of her system. So far, this system has been working great (as great as any plan works with Ana). On the four hour ride, however, the plan began to unravel.

Why?

1) It was a BEAUTIFUL day outside making standing outside not a punishment at all,

2) even thought I said it didn’t bother me, Ana knew there was no way that stopping the van on the interstate twenty plus times DIDN’T bother me,

and

3) she was angry about being stuck in the van and didn’t care about anything about ruining my afternoon as well.

DING DING DING! We have a winner!

I realized during about hour 3 that Ana was completely living in the moment. There I was thinking about the rest of the evening, the rest of the weekend, how we were going to go to dinner with my parents with Ana gone crazy, how I could punish her for this without really punishing her, and she was simply expressing her anger at being bored and trying to make me angry too.

It was that simple. No planning. No long game. Just pure manipulative in-the-moment Ana-ness.

So, I changed the rules.

I told her obviously she wanted to yell and I really wanted to get to where we were going so I was going to let her. Then, I gave the other kids headphones for their electronics, put on a favorite CD of mine and turned the speakers to the front and blasted it, and rolled down the window by Ana so the air blasted her and her screams.

At first, she screamed and screamed. But soon the combination of wind blowing in her open mouth and screaming made her throat sore (the crackers she ate as a snack helped as well) so after a short twenty minutes the noises came down to an acceptable level. But I didn’t stop my music or roll up the window. We continued the rest of the way just like that much to Ana’s chagrin.

What did I learn from this exercise?

I must not allow rules to be hard and fast. I must enjoy myself (genuinely) despite Ana’s behavior. I must keep her guessing as to my motives.

March 7 – Ana doesn’t behave well – THAT’S a surprise (sarcasm emoticon needed)

Ana’s behavioralist called and we chatted for a LONG time yesterday. She observed Ana in church a few weeks back and didn’t have much positive to say. Naturally, I understand coming from a behavioral point-of-view how off-putting it can be to hang out with people not educated on how to handle special needs children, but I also know what it is like to have Ana around.

It is hard. It is scary. It is nerve-wracking.

We agreed on the finer points of how the children’s department at church could be more special needs friendly, more sensory aware and more socially respectful of those with differences.

We disagreed, however, on Ana’s role in the whole mess of things.

I know Ana. I know she can be a sweet and wonderful little girl with a wicked sense of humor. But she can also be a bully, preying on both children and adults who shy away from her. She is demanding. She has a very short attention span. She enjoys making people uncomfortable.

So where do we go from here? Since church is currently her only social outlet aside from school her behavioralist and I will work together as a team to train and educate those willing in the children’s department. I’ve noticed that it is not just Ana missing out, but other children with more subtle special needs.

I hope and pray they are willing to give training a chance. I know that many times territorial pettiness appears and I ask, sincerely, for everyone’s prayers that none of that will happen in our situation. Ana and the other children at church need to feel loved and accepted for who they are. That begins with training the adults in charge in how to love and accept them while simultaneously attending to the needs of other children.

I haven’t met a mountain yet that God cannot move!