Saturday, July 31, 2010

Trauma Effects vs. Mental Illness

Since Dr. F gave his opinion that many of Taz's issues are related to early childhood trauma, I've been doing some reading up. But first, here's some background.

Taz spent almost his first year of life with a very loving kind older woman who fostered babies until they went home or to pre-adoptive families. When Taz was about to turn one, two very traumatic events took place.

One, he had his palate surgery, which is a big operation. And two, he moved from the only mom he ever knew to a pre-adoptive family. So, as he was healing from his surgery, he was also transitioning to a new family. One that included a mom, dad, and 6 yr old brother. Oh, and an entire farm.

Taz went from living in a quiet environment with one caregiver in a small home to living on a farm with a family of four. All the while, healing from a major operation.

He had just turned one, which is significant in my mind. A lot of developmental growth happens just before and after 12 months of age. Most are exploring how to use their legs for walking instead of crawling. Many babies are also beginning to communicate with words or gestures. They are also in the throes of stranger anxiety and making significant relationships with other adults outside their family. They are quickly developing fine motor skills like feeding themselves and drinking from a cup. There's a lot going on for a one year old!

Taz should have been going through all these stages, but instead he was dropped from one traumatic event, surgery, to another, a complete change in environment and losing the one caregiver he felt safe with.


(Taz right after surgery)

So, he was supposed to be healing from surgery, meeting major gross motor and language skills, all without the support from anyone he knew and trusted. We know from Maslow's Hierarchy of needs there can be no growth or development if safety is not first achieved.

Taz did not feel safe, therefore he did not learn to walk or talk when he should have.

We also know how important bonding and attachment is to a child. Studies have shown that attachment within the first year of life is crucial to the development of most social skills (and sometimes even survival as the case of overcrowded orphanages with high infant death rates). This pre-adopt family didn't understand that. I believe that for the three months that Taz was in this pre-adoptive home, he had no bond or attachment with anyone.

He was lost.

Taz's speech therapist had visited Taz at the pre-adoptive family's home during this time. She said Taz sat in the middle of the room with his back towards everyone and didn't smile at all, as if he were depressed.

This family probably had all the best intentions in the world, but they had a farm to attend to. Taz was a very high needs baby. He needed someone to be with him ALL the time. To hold him, rock him, feed him, sing to him, carry him around constantly, for at least the first few months.

I think this family expected Taz to fit into their world instead of going into his.

They expected him to be a typical one year old. Actually, I think they expected him to be better than a typical one year old.

I received a letter when Taz came to us from this mother, mostly about his schedule and what kind of foods he liked. But there were several parts that jumped out at me that I've written below. Now remember, this is a very traumatized one year old we're talking about.

"Taz is selfish and thinks the whole world revolves around him. He needs to learn to wait and that other people have needs too."

"Taz is lazy so you have to hold his hands and make him walk everywhere. We are also making him use sign language to communicate."

Think about this for a minute.

Taz is one. All one year olds are selfish and think the world revolves around them! Not just that but he really needed someone to give him extra attention and extra love and meet his needs extra fast so he knew he was safe.

Also, they didn't seem to recognize that this was a fragile child that needed lots of time to acclimate to a new living environment and a new family. Instead they pushed him into the developmental stages they felt he should be doing way before he was ready. Before he knew he was safe.

Here's the sad part. When Taz came to us (I'll get into that trauma in a minute), any time we tried to stand him on his feet while holding his hands for balance he would start screaming bloody murder. When we stopped, he would stop. I think he had negative feelings associated with being on his feet. No wonder he didn't walk until almost 18 months!

(He did eventually learn to walk and talk)

He was also in no place to learn to communicate. He needed to know he could depend on his new family to meet his needs no matter what.

I've been told by an unnamed source that there was a referral on this couple called in for possible abuse and neglect. I don't really know what happened there. I don't think they abused him but I don't think they were particularly good to him either. They may have left him in his crib crying for long periods of time. At least that's what I heard. But before social workers could investigate the family called to say they wanted Taz out of the house by the end of the week. Their reason was because "he cried too much".

So the department of children and families had an emergency meeting to pick out a new pre-adoptive family for Taz. That's when we entered the picture. With two days notice, they told us about Taz. Then the social worker picked him up from the home he'd been in for 3 months, dropped him off at our house, then said goodbye and good luck, all in one day.

Trauma number three. Even though Taz didn't bond with the last family, it didn't do him any good to dump him with yet another family he didn't know within mere months of the last move. All he knew was that the last two sets of caregivers had disappeared and (even though we ultimately turned out to be pretty cool people) again he had to navigate a new environment and more strangers. New sounds, new smells, maybe new types of foods, new pets, new routine, etc. How scary!

If we had neglected his needs for nurturing and instead pushed his development like the last family, Taz would probably have RAD (reactive attachment disorder). But we didn't. I quit my job to stay home with him. We didn't let anyone babysit for several months. We held him all the time. I carried him in a sling. We rocked him to sleep every night. We spent tons of time with him, playing peek-a-boo, bathing, massaging, cuddling.

We didn't push him to walk or talk. We met all of his needs for him whether he was able to on his own or not. We made him depend on us for everything. Gradually he learned to trust us. And only then did he start meeting his milestones. Very late. But late is better than never. And late is better than RAD.





(Taz and Daddy, a special bond)

I've been reading a book by a psychiatrist who specializes in childhood trauma. I've learned a lot.

First, trauma, no matter how small, impacts the brain. The earlier it happens the more devastating the effects are. Taz certainly shows some effects from his early trauma. For one, I believe this triggered the bipolar symptoms. Two, he's very anxious. Three, he has the survival instinct that kids with traumatic backgrounds do. Four, he has trust issues.

I think trauma does account for some of the "fight or flight" response we see.

BUT. I don't think it's everything.

Because Taz did have his first foster mom who nurtured him and loved him and took care of him, I think he fared better than others. The first twelve months of life are so important. I hate to sound so drastic but the first year could possibly be the difference between becoming a sociopath and being able to heal and have significant relationships in life.

Two stories in the book I read are perfect examples of this.

One 16 year old boy was in maximum security prison for violently murdering and raping two young girls. He came from a loving hardworking family with high morals. None of his siblings had any criminal history. This boy was deemed to be a sociopath, meaning he had no feelings for anyone but himself and couldn't empathize or connect with other people, and ultimately would spend his life in prison.

A 6 year old boy was found living in a cage with the dogs his caretaker had a business breeding. His basic needs were met for food, clothing, and water but his caretaker (an elderly man with no experience with children) treated him like the dogs he bred. The boy could not walk or talk. But once he was put in a home with a loving patient family, he very quickly began catching up developmentally to his peers and was able to have lasting relationships with others.

What was the difference?

Well, the first boy, the sociopath, after investigating his background had found his mother (who had a low IQ) had become overwhelmed caring for two children (he had an older brother) and left the infant home alone most of the day while taking the older son out for long walks and errands. His father worked long hours and also did not interact with the infant much. He had little to no human interaction the first year of life. Once he got older and they found he was delayed and acting out they got him specialized services and he went to special schools. His parents were very loving towards him and tried to help him the best way they could, but it was too late. The damage was already done.

The boy raised by dogs, however, had been nurtured, cared-for, and loved by the dog breeder's wife for the first year of his life before she died. After she died was when the neglect had started. But he was already able to associate human contact with pleasure by that point.

Two extreme stories of course, but you get the idea.

Taz had major trauma early in life that contributes some what to his current (and probably lasting) issues. But his infant experience of nurturing essentially saved him from even more devastating problems than Bipolar Disorder. And for that, I'm thankful.



Trauma vs. mental illness:

- Taz is able to have significant deep relationships and attachments (Nana, Grampa, daycare teachers, friends, etc)

- Taz's behaviors are mostly dictated by his mood, not by fear or by the need to control a situation. He is fearful, but that doesn't account for his behavior. He is afraid of many things but he tells us and we reassure him, like a typical child.

- Taz is not a sociopath. He is compassionate and can empathize with others (when his bipolar mask isn't in place)

- Taz's behaviors are not triggered by situations that relate to his trauma (at least not most of the time) as the doctor said. He is in an internal battle, it's often within himself. That's why one day he can handle getting himself dress, and the next he can't. One day the battle is calm, the next day it's raging.

- Taz is not manipulative

- Taz allows himself to be loved and can love others





Now if I could only make those know-it-all professionals see.

13 comments:

  1. I think you are definitely on to something.

    And having worked with lots of kids in foster care and having studied the effects of early trauma extensively, Taz's situation has much going for it. You're right; the responsive caregiver in his first year probably saved him. Then, when you got him and knew to meet his every need just like you would for a newborn, you reassembled what the intermediate family undid.

    I told you that Blogger has been eating most of my comments, but I've tried to tell you several times how I admire your strength. And I know you read my blog posts where I talked about how doctors are expert consultants, NOT the ultimate authority! (Some of them forget this!) YOU and Taz's dad are the ultimate authorities. And why am I telling you this? Your struggle with well-meaning but bone-headed providers is part of what inspired that post.

    I've read the book you talk about here. Dr. Levine, I think is the author? I think that Taz's provider's insistence on "blaming" everything on past trauma and current parenting is most striking in the fact that it is SO typical. Sometimes, I want to scream in people's faces that I take parenting seriously; that I have three typically-developing children; that I work closely with our behavioral management specialist and do EVERYTHING that she says; that I am not a bad mom.

    But it happens to us all too often, doesn't it? I so wish I could offer you more, but all I've got are these words on a screen.

    Lucky for everyone, you're a total bad ass. Taz couldn't have asked for a softer place to land.

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  2. Thank you for sharing your story. It's a devastating and heartwarming one, all combined.

    The only thing that kept resurfacing as I was reading is just how very, very lucky Taz is to have you. The love, compassion, and selflessness you've shown him will result, eventually, in a boy who is able to navigate society with mutual care. He may have tough times, but you've softened his experience of life exponentially.

    You are truly a blessing to him. And your story is a blessing to all who read it. Thank you.

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  3. Someone on Twitter (@NoStylePoints) posted a link to this and I clicked through. I started reading and kept on reading a few more posts.

    My own daughter was born with a cleft palate. She spent the first 21 days of her life in NICU. She had a jaw distraction at 9 days old. A feeding tube placed at barely three weeks old. Had palate, ear tube, and g-tube surgery at 5 months old.

    I, in the meantime, struggled with severe Postpartum Depression, OCD, PTSD, and did the best I could do. I was hospitalized myself at 56 days postpartum. It wasn't until I stopped pumping breastmilk for her at 7 months that I stopped resenting her for all the medical issues she had going on and really started to bond with her. I am thankful we had that happen so early.

    We've always been a loving, caring family with an emphasis on our kids. I have a sling, I've nursed. I consider myself to be a good mom. I'll do whatever I have to do to make sure my kids are happy, well adjusted, healthy, and if that means I have to fight tooth and nail for them, I'll do it and have done it.

    I've worked hard this past year to work on her emotional well-being as we finally started realizing there was a tremendous issue.

    When she got home from school 30 minutes earlier than her sister and her brother was still asleep, we curled up with a favorite blanket and book in the front seat of the car. We cuddled as she at a snack and then I read to her. Or we played a game. I made a point of connecting with her throughout the day. My husband did as well.

    But we are still facing issues, the primary ones being:

    An inability to respond to consequences - just like Taz, we could give her consequences for one thing 20 times in the same day only to have her continue to do it.

    That means she too, is not learning or changing.

    An inability to recognize personal space. This is particularly challenging as she doesn't respond to consequences meaning if you ask her not to glue herself to you in the middle of a conversation, she is unable to do so. This also translates into opening food items, etc, that do not belong to her. It's gotten so extreme that we have an alarm on her bedroom door, our fridge and a lock on our pantry door because we couldn't afford to continue to replace lost food. We STILL have a monitor in the kitchen that we turn on at night as well. She's four.

    A lack of remorse for negative behavior. She's almost set her bed on fire, tossed a clothes armoire on her sister, thrown a wire basket at her sister's head, and all of it was met with a shrug and an "I don't care." It's chilling.

    The melt-down. They're getting progressively worse than better. She's four. She's going to have tantrums. But they shouldn't involve her yelling and screaming at the top of her lungs for over 20 minutes or flailing and hitting at us. She will also give what I call "the evil eye" My husband doesn't see that in her but I get it quite a bit and it scares the crap out of me. These tantrums are triggered by anything and everything. There is no predictor or pattern to her behavior which makes it all the more frustrating. Right now we just roll with it.

    Many days I let behavior I should probably be disciplining with her slide because I just don't have it in me to fight THAT battle today.

    I know she gets frustrated because of her speech. I know she gets frustrated when we have a hard time understanding her. I know she's a happy little girl deep down and I will try to reach that little girl when she's hurting. Sometimes it works, sometimes it doesn't.

    Because of EI, I know the earliest I can take her to a psychologist around her is at age four. Guess who has an appointment in September?

    I am praying for answers. I am praying for understanding and solace. I am praying mostly for her because I know she's frustrated. I want to help her be comfortable in her own mind. And yet I am afraid that she never will be -

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  4. I understand how it is to feel confused, unsure of where to go or what to do but feel a pressure that it should have been done yesterday.

    Have you found that one experience is a piece of the puzzle, a little bit of information is another piece of the puzzle, something that triggers a memory gives you another piece. All you have are all these pieces bouncing around inside you until at the right moment the last piece of the puzzle finds its way to you, they all come together in a way that makes sense and see the answer clearly.

    May the piece that brings you peace be yours ASAP.

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  5. All I can say is thank god his with you and that you are fighting for him. I cannot imagine what might have happened to your son if you weren't his parents.

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  6. Fantastic post, and I think you are dead on. My daughter was institutionalized for her first year and a half and I don't think she has recovered to this day, she is 7. She also has the trauma of a disrupted adoption, after being with the family for 3 years. I think the distortion of brain chemicals brought on by massive stress in an infant can most certainly bring on bipolar. My daughter also has RAD, but it is resolving.
    Again, love the post, and the pic with the dog made me laugh.

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  7. Amazing Mama - your points are heard. Loud and clear and you are so very wise. Wow - what insight you have - Taz is beyond words lucky to have you.

    Print this the next time you feel you have so much to say to some dumb doc/therapist who doesn't get him. This post says it all.

    Much love!
    E.

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  8. Lauren, I'm so sorry you had to go through that. But the important thing is you are working hard with your daughter now to overcome all these scary medical procedures. having seen Taz through 3 surgeries i know it can be tough on them. i can't imagine having to also go through the g-tube stuff as well. poor baby. but you are right on to give special attention to your daughter when you can. no one expects us to be super parents but it sounds like you are doing the best you can for her. oh, and i know all about picking battles. believe me. i've had the nastiest looks in public when my son calls me names and growls at people. but, when it comes down to it. that ain't no big thing. not in our life anyway. lol. and i know the frustration with finding help for her. it took me a long time and many hours on the phone trying to find the providers we have now. it wasn't easy. especially working with state insurance. hopefully you will find some answers and get some help very soon. i'll keep you and your situation in my thoughts.

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  9. Cassieopia, pieces to a puzzle, yes, that's exactly how it feels! i don't know that i have the puzzle completed yet though. but the pieces are starting to fit together so we can the bigger pictures. ah...the mind is so confusing.

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  10. Essie, i know a lot about RAD and have worked with RAD kids and it is heartbreaking. i'm glad your daughter is doing well though. she can most certainly be healed, i've known many who have, but it's a long battle. i'm glad she found a family who won't give up on her. i think it's the saddest thing when families have to disrupt an adoption. i don't blame anyone and i don't judge them...but it's really so sad for the kids. i'm glad she has someone fighting for her now though. it will make all the difference in the world.

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  11. E Squared, thanks! good idea about printing it out! it's so hard to speak clearly when you feel pressured and on the spot. maybe i'll print something out next time and say, "ugh. just read this!" then go get a coffee or something. lol. so much easier!

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  12. Leslie and Jones, thank you so much! most of the time i feel incompetent to be parenting such a high needs child (i certainly don't have a degree for this) but every once in a while when i look back at everything, i give myself some credit. could be worse right? thanks again.

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  13. I appreciate your response so much! I'm thankful that our ped is very willing to work with us to find us the help she needs. I asked for a psych referral and she didn't even bat an eye. I am optimistic we are started on the right road to getting help. She'll be starting an all day pre-k program soon to help with socialization and we've been going to church more lately. She's doing okay but sometimes we have a battle in dropping her off - not the normal stuff either - this is full on wailing, screaming, etc. This morning she chucked her bible at Dad. Most of her teachers are familiar with her behavior and are really good at dealing with it and talking her down. Most of the time when we pick her up, she's doing just fine.

    I think what I've had to come to terms with is that when she was first born, I told myself that if I could just get through the first year, we'd be fine. No one told us about behavioral fallout or speech therapy or the lifelong stuff back then. So it's been challenging for me to deal with that as well. But it is what it is and all I can do is move forward the best I can.

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