Mariah Update - Kind of

This is an email I sent to Mariah's primary teacher (who is wonderful). I decided to post it here just to give a brief update on Mariah. We're still plugging along, one day at a time, but when I look back 6 months or a year, I can see progress.


First of all, thank you so much for loving Mariah and the other kids in her class. I could tell after the first few minutes of your first day with them that I didn't need to worry one bit about Mariah being in your class. You truly make a difference in our lives. Thank you!

I don't think you need to change a thing, but I would like you to have just a few details about Mariah's situation in case any symptoms pop up in class. I'll try to be succinct and informative, both.

Mariah was diagnosed in April 2010 with Reactive Attachment Disorder (RAD). From our brief conversation today, I can tell you have experience in the area of attachment. The attachment an infant forms with her primary caregiver affects every aspect of her emotional, cognitive, and psychological development. With a RAD child, this attachment is absent due to repeated trauma in the child's past (Mariah in the NICU), where the trust cycle was broken again and again, and the child "decides" she has to care for herself. From that moment on, all decisions are made from a survival standpoint. Her brain is hardwired wrong, with her amygdala (fight or flight survival) too strong, and her "middle brain" oxytocin loop (the calming, bonding, love hormone) weak or missing completely.

A RAD child has heightened senses and a major hyper-sensitivity to stress. She is overwhelmed easily and overstimulated quickly. Essentially, she's an emotionally 18-month to 2-year-old in an intelectually advanced, almost-5-year-old body.

The symptom list is long, but I'll list here a few we see often from Mariah. When she feels stressed, these are her survival instincts that kick in to remain in control. (She is not manipulative; she simply must survive and does not trust adults to keep her safe.):

• hyper vigilence - she has to notice everything and feels she must know everything. from her perspective, if she doesn't know something that's happening around her, she feels threatened and cannot protect herself from a possible risk.
• hyper activity - RAD kids are often misdiagnosed as ADHD
• emotional regression - screaming fits/tantrums and/or silliness/baby talk
• sudden shifts in mood - RAD is also sometimes misdiagnosed as bi-polarism
• no understanding of cause/effect, which leads to feeling no remorse and no empathy
• major anxiety over random, illogical, seemingly very minor things
• violent toward younger siblings
• no common sense. she is brilliant, but fits every new experience into a file with something she has previously experienced. she is getting better but has very little creative thought process. everything is a script she's learned from observation and/or experience. she has a really hard time if something doesn't fit right into her existing filing system.

Our experience with her, for the most part, is that she holds herself together while at church, and then, if something bothered her at church, she loses it the second we get home. So, there's a possibility you will never see anything unusual from her. Your demeanor is absolutely perfect for keeping her calm and feeling secure.

If she does start to get anxious, just do what you do so naturally: reassure her that nothing bad is going to happen. that you're there to keep her safe. pull her aside and encourage her to talk about what she's afraid will happen, and to share her feelings, etc. Basically, meet her at her emotional age. If she's acting 2, treat her like a 2-year-old. If she's acting 6 months old, treat her thus.

She has made a lot of progress in the last year and a half. We've been using Bryan Post's Stress Model (postinstitute.com) for the past 6 months. His bottom line is that a stressed out child is a scared child. (You have a few in your class:) Treatment involves adressing the fear at its core and allowing the child to process with emotional transitions and outbursts. We use time-in instead of time-out. And I am essentially with Mariah all day every day. She is hyper- hyper- hyper- hyper-sensitive to my emotional state, and Post's paradigm teaches me how to stay emotionally regulated in order to teach Mariah (and my other kids) how to regulate themselves and to form the bond with Mariah that did not happen in her early months.

I hope to start leaving Mariah in class for longer and longer periods. We'll see how it goes. The key will be to not pull away too fast, and to allow her, at any point, to say, "Ok, that's enough. I need my mom." I have to constantly remind myself that, emotionally, she's not much older than an infant or toddler.

I hope that wasn't too much information. If you ever have questions, please ask, and, again, thank you for all you're doing. You truly are a blessing in our lives--making the Sabbath much less stressful than it could be and has been in the past.


p.s. I am homeschooling Mariah for pre-k, and hope she is emotionally ready for a couple hours a day in kindergarten. (And I hope the district allows me to pull her every day after a couple hours. If not, I'll be homeschooling her.)

Jobs

Mariah does jobs as part of her therapy.  Often, when Mariah's working, Elaine will come and ask me for a job too.  This time I stripped her down, filled a bucket with water, gave her a rag, and told her to wash my shower.  She went to work and was happy for a long time, just asking periodically for more water in her bucket.

And Mariah can make those windows shine!

Respite

Lacy started respite last week.  We've done it twice now, and my life is forever changed!  Last Thursday, while Mariah was at Lacy's, Elaine and I made cookies while Sally napped.  Our house was so peaceful, and it was so nice to have some one-on-one time with Laney.  Yesterday, when I dropped Mariah off again, Elaine asked, "Are we gonna make cookies?!"  She went to play with Evan instead.  I put Sal down for a nap and READ A BOOK!  IN THE MIDDLE OF THE DAY!

Tomorrow Lacy's coming to get Elaine for a few hours so I can have some time with Mariah.  I cannot even describe how amazing this woman is!  Oh, and last night, she treated me to a yoga class.  It felt so good.

16 Minutes

A couple weeks ago, Mariah earned 16 minutes of princess dancing time by making eye contact for 16 seconds during cuddle time.  She was in princess heaven.

I would love to see this face more often.  It's pretty rare.

The amazing thing was she actually went the whole 16 minutes without getting silly and/or hyper.  (Elaine was at Evan's house.)  At one point, Sally went into the room, and she started getting a little silly.  I told her, "Even though Sally's in the room, I want you to stay calm.  Take some deep breaths and make little mountains with your brain." And she did.  I heard her a few times over the next 5 minutes, starting to get silly and then taking deep breaths and calming back down.  Now, if only she could do that with Elaine.  Will it ever happen?

Coming Clean

Ok.  So I've been living a double life, and I'm ready to come clean.  My two lives:  my blog life and my real life.

In my blog life, I'm a mostly happy wife to an amazing husband and a mostly happy mother to 3 mostly cute and mostly obedient children.

In my real life, I have a 4-year-old with Reactive Attachment Disorder (RAD).  This illness, before being diagnosed, was destroying our family.  We rarely laughed or had fun together.  I struggled with HUGE (and mostly unexpressed) feelings of inadequacy, failure, anger, and depression, which affected our marriage (my husband is a SAINT).  I would read other mother's blog posts and think, "These women seem to genuinely enjoy motherhood!  Why don't I?"  This was heartbreaking and embarrassing to me, because my primary goal in life has always been to become a mother (and love it).

There were good moments, and that's when I blogged.  Portrayal of the family I wanted to have.  But I was always stressed and was almost always "failing" as a mother.

Nine months ago, Mariah, through miraculous events, was diagnosed with RAD, an illness that often affects adopted, foster, and/or abused children.  She was none of those.  But she was a NICU baby.  RAD is the result of a child's perception of repeated trauma.  Mariah perceived, as a tiny baby, that her mom had abandoned her and/or was not meeting her most basic needs.  Because of this perception, she "decided" she could not trust adults, especially mom, to take care of her, and she would have to do it herself.  From that point on, every experience was cataloged in her brain from that viewpoint; she was always in survival mode.  Her brain was actually hardwired incorrectly, with the fight or flight part being overdeveloped, and the emotional/social part underdeveloped.

I've always known, especially with my education in Family Science, that the attachment or bond between a mother and her baby is vital to life.  However, I never imagined how many things are affected by the lack of attachment.  Through treatment, we have seen a lot of progress, but here is a short list of some of Mariah's original symptoms:

• No understanding of cause and effect:  No parenting style works.  Punishment, reward, bribery--she does not care, and really is not capable of understanding it.  She must be in control for her own survival, no matter the consequences.
• Out of touch with her own emotions:  She's was either happy or angry all the time.  The happiness was an act.  She did not know how to recognize other emotions, and unless she was acting out in anger, she pasted on a happy face.
• Incapable of identifying others' emotions.  Incapable of feeling empathy:  She would laugh when Elaine got hurt or was sad.
• Incapable of feeling remorse:  She would hurt Elaine (or me) and laugh.
• Right and left hemispheres of the brain do not communicate, resulting in a very accident-prone, uncoordinated child.

Other symptoms:

• No eye contact, except on her terms.
• No physical affection, except on her terms at inappropriate times.
• Weak immune system.  Random rashes, with no known cause.  Sick often and for longer than other kids.
• Hyperactivity.  RAD is often mis-diagnosed as ADHD.
• Random spaciness.  Sometimes stares off into space for a while.
• Mood swings.
• High anxiety.
• Easily over stimulated.
• Impulsive.
• Hyper vigilant.  She notices EVERYTHING, and feels the need to know EVERYTHING.  Compound this with a possibly photographic memory, and life's a bit tricky for Mom.

A RAD child thinks in order to survive she must be in control at all times and tries to prove that her perceived reality is true:  Mom is a terrible mom and cannot be trusted to take care of me.  Mariah would relentlessly push my buttons until I lost my temper.  She would then get a look of triumph on her face, as if to say, "See, I knew she is a bad mom.  She can't take care of me!"

I have not shared all of this on our blog before now because I was trying to protect Mariah.  We are hopeful she will heal completely and will not be adversely affected for life.  I didn't want people who saw her in the future to think, "Oh, you're the one who has/had RAD," or "I wonder if she still has problems."

But I couldn't handle the two-faced aspect of my blog.  So, there you have it.  The real me.

RAD is incredibly complex.  Some say it's like having a bi-polar child with ADHD and autism who hates you.  It's also been said that the physical and time demands (excluding emotional strain) of parenting a RAD child are equivalent to having triplets.

Therapy/treatment is all-consuming (time and otherwise), exhausting, and stressful, but not as stressful as constantly wondering what's wrong with my child (or, more often, what's wrong with me?).

One of the hardest things to deal with, and something that sets us back often is attention she gets from other adults.  Any attention she gets, she feels she somehow manipulated into happening.  As long as she can control other adults and manipulate them into paying attention to her (giving her control), she does not need me and will not form the attachment with me.  She tests each new adult with whom we come in contact, to see if she can take control.  If the adult fails (gives her the attention on her terms), she acts triumphant, and her attention-seeking behaviors escalate.  But in reality, she feels insecure and scared because this adult failed her test and, therefore, cannot be trusted to take control and take care of her.

So, if you ever do see us, here are 3 things you can do to help:

1.  Put her off.  If she initiates conversation or tries to draw attention to herself, say something like, "Just a minute, Mariah . . . ."  Continue doing whatever it was you were doing, or make something up to do.  Then turn your attention (briefly) to her.  This shows her that you do care about her, but your relationship is on your terms, not hers.

2.  Always defer to Mom.  If she asks for something, tell her, "Your mom takes care of you," or something like that.

3.  Compliment Mom.  This is my favorite one, and the most effective.  Pretty much anything Mariah says can be turned to focus on me and my better qualities.  This does 3 things:  (1) Control is back in your court; (2) Mariah is reminded that she has/needs a great mom; (3) Mariah stops talking because she doesn't really like to hear how great I am.

Examples:

Mariah:  I'm 4!

You:  You're so lucky your mom had a birthday for you!

Mariah:  (does a little dance in front of you to get your attention)

You:  Simply ignore her, or say, "You're Mom is amazing!  She taught you how to dance!"

Mariah:  Look at this!  (shows you a piece of food she's eating, or anything else)

You:  You are so lucky to have a mom who takes care of you!

If in doubt, just ignore her.  Really.

And, down the road someday, hopefully I (and you) won't even have to think about it.

So, the cat's out.  I won't share too many details on this blog, but now you know, and I can at least mention it among the chaos of our lives--good and bad.