July 16 – It looks like no-go on treatment facility (but at least Ana is doing well)

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.

 

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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.

January 20 – Yet another ER visit

I’ve been sort of numb for the past couple of days with Ana gone. She is doing ‘okay’ in the hospital but they still don’t have any type of plan for her which is frustrating me because she’s not there on vacation.

Yesterday evening I received a call saying they thought her arm was bleeding through her cast and wanted to know what they should do. Of course I advised them to call her surgeon. An hour later I got a call saying she was en route to the emergency room. I met them there.

Many hours later….they needed to open her cast to look around and see where the bleeding was coming from then fix it.

I asked for her to be given at least a valium.

Many hours later…this hospital (with the hand specialists) has a policy against giving sedatives to pediatric patients.

I promptly told the surgeons they were not going to work on her unless she was given something to help her stay calm.

Many hours later…we were transferred to a children’s hospital where she could receive sedation. I was totally floored that the hand surgeon came to the children’s hospital to do the procedure. Doctors, as a general rule, do not follow patients. Thank you, God!

So, at midnight she was sedated and they began their explorations. Come to find out the pin the surgeon placed in her wrist popped through her skin (it’s okay to cringe just thinking about this). There is nothing anyone can do but keep the arm super padded.

Unfortunately, she had a bad reaction to the sedative and vomited for the next two hours.

I got home this morning as my husband was waking up to get ready for work.

Rather than always focus on the negative I try to actively inventory all the good things that happen in situations like these as I go. Here is my list:

1) While in the waiting room Ana got up from her seat to come sit beside me and laid her head on my lap.
2) Ana was able to tell me AND show me that she was scared rather than just be angry.
3) She cried when she was scared instead of getting angry.
4) She communicated with the doctors and other medical staff.
5) There were no melt downs.

For now, I will take this as a victory in overcoming RAD.

January 16 – It finally happened

Ana’s anger at having a cast and being out of school (bored all day) has been growing. Today she woke up in a mood and started the meltdowns almost immediately.   Let me be clear; these are not sensory meltdowns nor are they overwhelmed meltdowns. These are purposeful, intentional, carefully crafted fits fueled by rage.

“What do they look like?” you may ask.

They start with her screaming. Have you ever seen the movie Matilda? There is a scene toward the end of the movie where the evil principal realizes someone has been in her house and flies into a rage. That is the closest thing I’ve ever seen to Ana’s rages. The sounds are identical. If Ana was bigger and had better use of her arms, the damage would also be identical, as well, I am sure.

So, the yelling  begins  the meltdown. Following that is a self-injury of some sort. Usually head banging. That is followed by a drop to the floor complete with kicking and screaming (and destruction of anything within kicking distance). Then she pulls herself together and goes on a rampage through the house or car or whatever public place we may be. She begins looking for easy targets to destroy: punching holes in the wall, kicking holes in the wall and/or glass, knocking breakables off surfaces, ripping things, etc…

That phase lasts until she is restrained. Once restrained she goes stiff, arches her back and rage screams and tries to destroy the person holding her until she runs out of steam. When she finally runs out of steam, she is fine, like nothing every happened.

She has complete control of these meltdowns. If at any point someone offers her a good enough reason to stop (go out for ice cream right then and there, for example) she turns it off. Like a switch.

Today, she had three of these meltdowns before noon.

Baby Grace had a super important doctor’s appointment we could not miss so I had to take Ana. While looking for a parking spot in the overcrowded parking garage she started a meltdown, complete with trying to kick out the windows of the van.

When I finally got a space she wiggled out of her seatbelt and bolted from the van before I could get out and get to her. She took off her coat (which I made for her because of her cast) and stomped in into the grime on the parking garage floor and then threw it. She ran away from me and started banging her head on other vehicles trying to dent them. By the grace of God she did not get hurt and did not damage someone else’s car.

By the end of the afternoon I was at my end. There is hard and there is harder than hard and then there is a point where you know you need to give up the fight. I got there today. The plumber was at our house, rightfully uneasy with the entire Ana meltdown situation, Ana’s psychologist was on the phone trying to figure out what to do, my husband was calling non-stop trying to co-parent from work (not helpful, really) and the other kids were crying because of all the Ana drama.

I made the call.

I started the process of getting Ana in an inpatient psychiatric unit.

I try very hard not to let Ana see me cry because she views it as a victory but I cried today. A lot. I feel like I’ve given up on Ana. I feel like a failure as a parent. I feel like I’m losing a child. I’m afraid Ana will regress due to the institutional setting.  I’m afraid Ana will hate me forever. I’m afraid Ana will feel abandoned.

I’m afraid Ana won’t miss me.

That is my biggest fear – that I love this little girl with all my heart and soul and have turned my life upside down for her and in the end I may mean nothing to her beyond what I can do for her.

While picking up Hannah at school earlier this week I watched as Hannah came out of the building looking for me. And I saw how her entire face lit up when she found me. And my face lit up finding her among the throngs of other blond haired little girls. Ana’s face has never lit up upon finding mine in a crowd, nor has she ever searched for it.st

I prayed nonstop today for guidance – just to give me some sign on what to do. My eyes were finally opened to see what effect Ana was having on the rest of the family. Everyone is suffering. My marriage is suffering – heavily. My kids are all suffering – a lot. Something has got to change.

After dropping her off I received a call that all was going well – she was the center of attention on the unit and was eating it up. I don’t doubt that for a moment.