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

Romian orphans from 1990 investigation
‘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 16 – It looks like no-go on treatment facility (but at least Ana is doing well)

Ana cheesin'

Ana cheesin’

Ana’s doctor changed her medication; she is back on Risperodol. This seems like a good thing. Her agitation is waaaaay down but now the Zoloft doesn’t seem to be working as her OCD/anxiety issues are surging. The self-injuring is down a lot. After our last little ER visit she seems to be thinking long and hard about hitting her head. I was very glad to discover that concussions can last for weeks. She needs a reminder about hitting her head.

So, the treatment facility in New Mexico seems to have hit a dead end. She receives Medicaid due to a waiver and we were told that after 60 days out of state the waiver will be cut. Hence, her Medicaid will be cut. She does not qualify for SSI or straight Medicaid because of our income. That puts us back at square one. I mean, really, in my head we’re playing Chutes and Ladders and we just landed on the real big ol’ slide.

At least summer is half over. Ana’s teacher is coming over twice a week to work on school work with her to keep her busy little brain stimulated (our district doesn’t offer year long school). She seems to really enjoy the one-on-one attention! We also started back with occupational therapy. We had to wait until they had a home-therapy opening because her behaviors were too bad to go to the site for therapy.

For the time we are keepin’ on keeping on. This is one of those times when things are relatively quiet and calm with Ana. I relish these times because I know it won’t be long until we are in another crisis. Parents without kids like Ana just don’t get the constant rollercoaster ride we ride in this house.

I’m glad they don’t.

For their sake anyway.

 

June 6 – Ana upped the ante

torez special needs orphanage

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 7 – And the rage goes on…

Our Family 2014

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?

February 28 – Good at School, Bad at Home – Bad at School, Good at Home

9 year old Bulgarian orphan

9 year old Bulgarian orphan

So this has become Ana’s pattern now that she is back at school after the surgery debacle. On days that I am met at the door by her teacher looking quite grim with a lengthy behavior report, she is an absolute angel at home. And on days when I’m greeted with  a much more relaxed teacher, she is a beast once we cross our home’s threshold. I truly wish I understood this child!

Another pattern has emerged. She looses it around 3:30 every day, without fail. What does she do exactly? She starts by fixating on going somewhere, be it her grandparents, a vacation, Great Wolf Lodge, swimming – you name it. It’s like she creates a reason to be mad. And mad does she ever get! Then her frustration and agitation grows as I tell her (ten million times) that we are not going wherever it is she wants to go.

At that point she starts yelling and banging her head on the walls. That leads me to put her in her room which leads directly to more head banging and kicking the walls. Eventually, I restrain her for about 30 minutes.

By 5:00 she is fine and ready for dinner.

I have no idea why she does this. She has an equally difficult period at school every day around 12:30 – 1:00 pm. We have checked blood sugar levels REPEATEDLY and there is no indication that blood sugar is the culprit. She has had an EEG and the result shows no abnormal brain activity.

I have tried keeping her really busy during that time period – nothing changes.

I have tried making myself 100% available before the explosion – nothing changes.

I have tried changing medication times – nothing changes.

I don’t know what else to try, but I’d like to get to the bottom of this mystery.

 

January 7 – Surgery

Ana 1 day post surgery

Ana 1 day post surgery

Today was Ana’s surgery. The doctor straightened her wrist. Part of her genetic condition is that she was born with both hands turned in (like club foot). She had two surgeries when she was two and now they are repeating those surgeries because the bones in her arm are growing at different rates causing the hand to turn back in.

Surgery is hard for an adult. Surgery is really hard for a kid. Surgery is really REALLY hard for a kid with RAD who has spent way too much time in hospitals in her short life.

The day began well. Yesterday was her pre-op appointment so we were prepared mentally for the surgery. This morning she woke up, no problem, went to the hospital, no problem and even sat in the waiting room with no problems.

When they took us back to pre-op the anxiety levels sky-rocketed. She hates IVs, primarily because they have to be in her ankle or foot which hurts more. I had promised her she would be asleep before they put the IV in, but it took a lot of convincing on my part to get the medical team on board with that plan.

Finally, it was time to go. They gave her sleepy juice, a.k.a. Versed, and nitrous gas to get her out before taking her back. Ahhh….success.

The surgery went fine. The anesthesiologist accused me of being too calm (“You are the calmest parent back here. Why?”). The surgeon was quick which is the hope when going to one of the best hand surgeons in the country.

Things began going south after surgery. First, they waited till Ana woke up to come and get me. Bad idea, guys. That got her in fight or flight mode and we all know which way Ana goes. Add her being hooked up to an IV, oxygen and her arm in a cast and fight took over. She was being held down when I got back to her. That’s when I took over.

Kids notoriously act awful after anesthesia and Ana is no exception. It’s best to picture a fifty pound angry drunk. And I don’t mean your garden variety angry drunk either. I mean the TV show COPS worthy, kicking out the cruiser back window, cursing up a storm, spitting, ten second teaser clip angry drunk.

They wheeled us back to recovering and the nursing staff was not prepared for all that Ana had to offer. To help with pain management they gave her a nerve blocker at the end of surgery that made her arm numb for a couple of hours. That’s a great plan for pain, but awful when Ana is angry. Her cast made a great club.

She started out by kicking her nurse in the face. Then she hit me in the face with the cast. Then she bit her own finger as hard as possible (I really was afraid she broke the finger but they checked and she didn’t – thank you nerve blocker) which led to the junior doctors overreacting and casting her hand. Ana stems by flicking her fingers in front of her eyes and the new cast improvements now make that impossible.

I asked for a sedative so I could get Ana home and was told that hand doctors don’t do sedatives. I was told to call her psychiatrist. While wrestling/restraining Ana I waited on hold for Ana’s psychiatrist and then had to explain the situation to every single person I spoke to at the psychiatrist’s office while Ana was screaming her head off.

By this point her sweet recovery nurse was crying.

When I finally got a call back from her psychiatrist it was bad news. Her pscyh did not have script privileges at the hospital Ana was at. She said the surgeon should write the script. I explained they said they weren’t psychiatrists and didn’t write psych scripts. Her response was a tirade about how a doctor is a doctor and should take care of their patients regardless of their particular specialty. Noble rant, but useless. I said thank you and went back to restraining Ana.

Finally, I got her to calm down enough to wrap her casted arm to her body so she couldn’t use it as a weapon. I had to call my husband to come get her since I didn’t feel safe taking her home in the car with the baby (who was with us and being perfect, I might add).

Their parting advice was to have psych meds lined up before her next surgery which is in six weeks. I felt like banging my head against the wall or wringing their necks.

January 5 – So frustrated!

Babies at a Chinese orphanage

Babies at a Chinese orphanage

I am so frustrated. I’m sure Ana is too, but for now I’m talking about my frustration. As I’ve mentioned before, Ana waits to be bad till I’m busy doing something with another kid. I have no idea what to do about this.

At church Ana decided to yell during the worship service so we had to leave. I’m all for natural consequences but, honestly, what can I do for that? The only consequence I could think of was bringing fire wood up to the porch since that keeps her outside where we don’t have to hear her noises.

She was able to turn bringing the firewood up the porch stairs into a huge, dramatic ordeal, complete with self-injuring. It took forty-five minutes, but eventually she got it done. But, she was mad.

She came inside just in time for a Baby Grace massive diaper blow out and while I was cleaning it up she saw the opportunity to stir the pot. She started screaming, banging her head, pinching her sisters, etc… I was wrist deep in poop and could NOT comfort Ana.

This is where I find myself all too often. I understand that Ana needs a lot of my attention, but I can’t always give her 100% of my time. I feel like we’re spinning our wheels.