We have a plan!

Literally. This is our plan. Please let me know if you have tried similar plans and if so, how did they work? What would you change?

The Attitude – this should be what Ana sees from us at all times
Playful
Loving
Accepting
Curious
Empathetic

 
The (long-term) Goal – for Ana to be comfortable away from us, and our attention, pursuing her own interests while respecting our role as parents in that we are to be respected and obeyed.

The (short-term) Goal – for Ana to depend on us for making the best choices for her

Identified short-term behaviors to eliminate

  1. self-injuring
  2. noises meant to annoy
  3. repeating herself with the intent to annoy – not communicate

Identified behaviors to encourage

  1. voluntarily participating in family activities
  2. voluntarily communicating thoughts and feelings
  3. demonstrate emotions other than anger and silly/happy

keep Ana busy

  •  have easily achievable tasks for her to do
  • (ex) pull out socks, pick up shoes/dirty clothes/Grace toys/etc, wipe table, clean kitchen chairs, dust, water plant, feed cats
  •  if at all possible, the tasks should be a joint effort
  •  do not praise her for doing them, BUT MAINTAIN THE ATTITUDE
  •  if she does not/will not do it, hand over hand

Ana is to have no choices

  • that does not mean we can’t choose what she would choose
  • always make choices for her that have the highest chance of her success
  • if she gets upset with our choice explain to her that we need to make choices for her right now because she has trouble making good choices

Preventative measures

  • for the time being, Ana makes no unnecessary trips out (subject to change based on behavior)
  • Ana stays in the room with one of us at all times
  •  no rewards announced ahead of time
  • no if/then statements (if you are quiet at church you’ll get candy)

Consistent consequences

  • for self-injuring or hurting others, restraint
  • for purposeful bad manners at dinner, sit in chair in kitchen while we finish, then she finishes. If she throws a fit, I’ll go sit with her in another room until everyone else is finished. I’ll read or do something else/not pay attention to her and ignore yucky noises
  • if she talks about daddy or anything connected to him try to script what she is feeling or is possibly feeling (“I hear you say daddy and stepmom but are you really nervous?”).

– explain everything to her: “Ana, I’m sorry you have to sit and watch us eat, but I don’t think you’re ready to eat at the table with others yet. You can try again tomorrow.” or “Since you’re not ready to be in a room by yourself you can help me _______ so you don’t get bored.”

My schedule

6:15 – wake up

6:30 – wake up Hannah and Drew, get them going

6:50 – wake up Ana

7:10 – Ana at table eating breakfast, otherwise ready to go

7:20 – take girls to school

2:30 – pick girls up

2:30 – snack

2:45 – fun activity at table with all girls

3:15 – homework all girls

3:30 – start dinner, pick up house

4:30 – Drew do homework at table, Grace and Hannah can watch tv

6:00 – dinner

6:30 – clean up after dinner – entire family

7:00 – baths (tv time)

7:30 – Ana bedtime/book

7:45 – Hannah bedtime/book

8:00 – Drew bedtime/book

8:15 – Grace bedtime/book

Advertisements

You Must Read This Book

Building the Bonds of Attachment

Building the Bonds of Attachment

I know I say that a lot about books, because I’m reading so many helpful books, but, seriously, this time you MUST read this book if you deal with a kid with RAD! Building the Bonds of Attachment, by Daniel Hughes,  is an easy read, with down-to-Earth language and lots of explanations.

The author created a child (Katie) as a case study of a typical RAD scenario. The story follows Katie from birth through 8 years of age. She was born into a physically abusive and emotionally neglectful family which planted the seeds of RAD. She was removed at age 5 and went through three foster homes before her case worker found a foster family and therapist experienced in RAD who agreed to take her on.

Most of the book focuses on Katie’s time at her final foster home. Included is also many therapy sessions and daily  journal logs of her foster mother.

I really enjoyed this book for many reasons.

First of all, Katie reminds me so much of Ana in some places it is downright scary. Not all the time, mind you, but I think the author created Katie to embody the worst of all RAD kids. This was extremely helpful because the strategies Jackie, the foster mom, used are definitely worth trying for our situation.

Second, strategies were given. Real life situations were described with a variety of strategies offered, some working some not. This is helpful. Too many books work in the theoretical world which really doesn’t apply to RAD kids.

Third, the book laid a sort-of map of where we’ve been and where we (hopefully) are going. This makes me feel not so alone and not so bad as a parent. It reinforced my gut instincts that specialists usually refuse to acknowledge, but challenged me to consider different points of view and new ways of thinking.

All in all, Building the Bonds of Attachment is an excellent read. Might I even say it is one of the holy works of RAD therapy. I hope no one ever has a child quite as severe as Katie, but if they do, this book is a great navigational tool for surviving the long and painful road towards ‘normal’.

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

Hope

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.

January 12 – The best laid plans of mice and men…

"To a Mouse" by Robert Burns

“To a Mouse” by Robert Burns

Our church offers a children’s program, AWANA, on Sunday nights and Ana truly enjoys attending. However, her behavior keeps her from participating in most of it. For the past year a volunteer with the church’s special needs program has been her aide and all has gone mostly well. Unfortunately, the aide’s son has his own special needs and she can no longer leave him alone to help Ana, putting us back at square one.

I will interject that the AWANA curriculum is great for typically developing (TD) kids, but not so hot when one puts on their special ed glasses. Each evening is broken down into three activities (each lasting about twenty minutes): lesson, games, Bible verse memorization and recitation. Kids are in classes based on grade and by gender in the upper elementary grades.

AWANA always begins with everyone (three years old through fifth grade) together in a large room. In our church that is usually about 75 kids. They hear announcements, sing a few songs, learn a silly dance, award winners (for verse memorization) are announced and then they are dismissed to rotate through the three areas.

The time frame for the entire night is one hour and 45 minutes.

Problems Ana encounters:

1) There are WAAAAAAY too many transitions for such a short amount of time. We’re talking five transitions!
2) The games are in a gym with about thirty to forty 8-11 year olds (sensory overload big time) and are not disability friendly so Ana can’t play. She has to sit to the side and watch while being bombarded with kids screaming and running in a small gym with no windows.
3) The curriculum is very abstract and assumes that kids have been immersed in Scripture since birth. Not only does this exclude kids new to church, but it also excludes kids with learning differences or delays.
4) There is a LOT of unstructured time. This does not work so well with a lot of kids – not just Ana.
5) The more Ana acts like a goof the more kids stare at her. The volunteers are not trained in special ed and have no idea how to handle social situations with a special needs kid.

Now that you understand the limitations to AWANA, I’ll admit that it is a great way for churches to reach elementary age kids and engage them in fun Christian studies.

As long as you’re TD.

So, knowing the reality of AWANA and wanting Ana to be successful I spent all Sunday afternoon adapting her lesson, putting her Bible memory verse on the iPad and working up a successful behavior management plan. She has a new assistant working with her (from her school so she is not NEW new) and I wanted everything to be in place so that Ana could have a great night.

We pumped her up about how awesome she was going to do. She was excited because she was going to totally nail her Bible verse. She even chose her reward for good behavior.

Then we left the house.

It started falling apart in the car. For whatever reason Ana started talking about going to Daddy’s house. I tried to shut her down but to no avail. Next came the screaming. I told her if she was going to be loud she couldn’t stay at AWANA. That did nothing but further tick her off.

I couldn’t turn around and go home because Drew was in the car and I had to drop him off. When we got to church I told her she had one more chance to stay at AWANA. That was met with screaming, kicking, and threats to hurt her siblings. It got so bad I had to restrain her in front of all of her peers and she still managed to get in a good head-butt.

To say the least we went home.

I dropped her off with my husband to deal with her. I HAD to take a break. She continued the fit.

When I came home later with Drew after AWANA I was met at the door by Ana who told me her step-dad hit her in the head. Not like a little hit, but banged her head against the desk. Obviously, I asked him what happened.

He explained that she was mid-fit and while trying to restrain her (because she was trying to kick a hole in the wall) she threw her body back and hit her head on the bed frame.

That is Ana. She always blames others for the consequences of her choices. We are crossing our fingers, saying prayers and hoping and wishing that CPS doesn’t come knocking because of these type accusations. Thankfully, everyone at school knows Ana and knows to take what she says with a LARGE grain of salt.

As for AWANA, we will try again next week.

January 10 – When Ana gets mad

The realization of Ana's Anger (that is the fancy artwork name)

The realization of Ana’s Anger (that is the fancy artwork name)

It didn’t take long for Ana to get over the anesthesia and the reality of having a giant cast on her one good arm to set in. Since she has two default emotions – happy and angry – it took about two seconds more for Ana to get really mad about the arm.

What exactly is she mad about? Many things. First of all, her arm hurts. Understandable. Second, she has to wear a cast. Annoying and understandable. Thirdly, she cannot stem. Not such a bad thing. Fourthly, she has lost her independence. Not such a good thing. Fifthly through Ninety-Ninthly are a bunch of irrational and illogical things that she is tying into this surgery to blame for being angry, like not eating at Olive Garden, and her sister’s favorite TV show annoying her.

Our days and nights are going something like this: Ana takes pain meds. Ana chills out and/or falls asleep. Pain meds wear off. Ana gets mad and her cast becomes a weapon and she is just plain mean. Ana takes pain meds….(repeat ad nauseam). The picture above is not the latest piece of contemporary photography but rather one of many new dent/holes in our wall from where she punched with her cast-club.  For those lovely additions to our decor she earned her arm being wrapped to her body with ace bandage.

Only five weeks and four days to go till the cast comes off. God help us all!

January 8 – Ana climbed in bed with me

This is hilarious!

For most children climbing in bed with mom or dad is a natural thing to do whenever they are sad, scared or hurt. For kids with RAD, it is not. Ana has never shown an interest in sleeping in bed with us unless she needs to throw up on  me at 3:00am.

As part of attachment parenting we practice co-sleeping. Currently, we have Baby Grace and Baby Gabe in our bed.  Drew co-slept with my ex-husband and I (and then with me after the divorce) until he was about five. Hannah slept with us until about three and a half and now we are more than ready to kick Grace out – her time has come!

But Ana never wanted to sleep with us. Ever.

Last night she woke up at around midnight crying. I knew her arm had to be hurting her so I gave her pain meds and helped her back to bed. She didn’t want her bed; she wanted in ours (with the two other babies). I told her that was fine fully expecting her to last all of five minutes. Surprisingly she stayed the rest of the night.And as a bonus, she wanted to be next to me.

I didn’t get much sleep but everyone else did and Ana and I got some exquisite bonding time making it all worthwhile. That’s what coffee is for anyway.