Monday, December 31, 2007

Help! My Son Just Shortened His Life Span

Philip has been stealing all sorts of food the past few months and in constant food reaction. His diet keeps his autistic behaviors at bay but also helps him with impulse control and social skills so when he cheats on the diet he loses whatever little impulse control he has, acts like a crying whining girlie PIB and I really hate to be around him. He is in constant trouble, can't focus on his schoolwork and he continues to steal food b/c of his loss of self-control which sets him off on a cycle of reactions. Tonight he just grabbed a piece of fudge and ate it. The last time he ate a piece of chocolate he was in reaction - his worst one yet - for over a month. He's been clean for a couple of weeks and was doing well. I am so frustrated. I cannot keep him from doing this - he is already under constant surveillance - is not even allowed to set foot in the kitchen , nor is he allowed to be in the basement where his brothers keep their candy stash by himself. If he wants to play in the basement, I send Betsy to watch him - how stupid is that?! He has his quiet time in the living room so I can watch him. And I don't send him to bed unless someone else is in the basement with him. Nothing works. He understands that the infractions cause him to get in trouble, he apologizes, repents, says he'll never do it again - which I believe about as much as a rat's patootie. In fact, he's earned the nick-name Rat because he sneaks off and steals other people's food. This is so incredibly frustrating. Can I put him in a padded room for the next two weeks?! And, No he's not hungry. I've been making a point of making him LOTS of food at meal times so that he is not hungry. He just hates his diet. He wants what everyone else has. And he has NO self-control.

Mabye I can send him to work with his dad for the next two weeks....hmmmm. ...unless someone out there has a padded room for rent....

Sunday, November 18, 2007

Nitty Gritty

Miriam got her period for the second time yesterday morning. She's doing ok with it. Fortunately, I discussed it with her just weeks before it came the first time so she wasn't scared but she did tell Ruth that she had "wet her pants" and forgot to tell me anything...I guess the biggest thing will be staying on top of the dates so I can ask her since it seems like she won't be sharing that with me when it happens. Aside from that, she's been managing the logistics of it ok by herself I think. It's interesting to see this little tiny girl with the mind of a 6 year old dealing with her budding body but I think it's gonna be alright.

Tuesday, November 13, 2007

Not sure What I'm fighting For Anymore

As I've been reading these past weeks, the thing that strikes me again and again is the evidence against the catholicity of the CEC. So many are saying that we are Anglican (which I don't believe is true - we just simply do not have any roots in the Church of England) or that we are Protestant. This just isn't what we signed up for. When we came into the CEC we came in as Roman Catholics excited to find a catholic expression of convergence worship. What made it a catholic expression was the episcopal govt and the orthodox teachings of the church. The apostolic succession was important to us - and still is. We were hopeful to see that we could perhaps have co-communion with our RC brothers and sisters yet not be bound by the difficulties which plague the RC church. It was the best of both worlds to us.

God called me clearly and with much heart-rending difficulty into the RC church. Once there I embraced it with joy even though I saw many flaws but I'd been around enough blocks to know that there is no perfect church. We came into the CEC when we moved to a new town and needed to start over with a new church family. The CEC was young and exciting and captured the catholicity in us perfectly. Now it seems to be becoming something else. The apostolic succession is no longer important to the leadership, it seems. Being able to commune with all the church universal is no longer a goal. "Orthodox" teachings have become chains to tie the laity's hands. This isn't what I signed up for and I'm beginning to wonder if the CEC was ever what we thought she was. Either she has gone far adrift in ten years or we were deluded from the beginning. I am sad to say I want out. I'm willing to fight a bit on my way out but what, exactly, am I fighting for? To make the CEC back into what it once was or to force it into a mold it never filled in the first place?

Monday, November 12, 2007

The Heart of the Son

My quote of the day from St. Francis de Sales:

Blessed is he who has the dispositions of a filial heart towards the paternal heart of our heavenly Father. ~St. Francis de Sales, Consoling Thoughts

He shall be a son to me, and I will be a father to him. ~1 Chronicles 22, 10

This gave me pause today. We always think about the "heart of the Father" towards us but rarely do we talk about the "heart of the son" toward the Father. This may be at the root of so much of our hurt. Spiritual counsel would tell us that many of our hang-ups about God have to do with our view of our fathers but now it's turned on its head. Perhaps our hang-ups have more to do with our view of ourselves as children.....Of course the two are intricately related but the first allows us to blame the other, the latter forces us to examine ourselves and our response to the other.

Saturday, November 10, 2007

Staring at the Abyss

There's a really dark side to raising these kids with special needs which a lot of people don't see. Ruth, for example, seems to appear to most people as a bright, warm and cuddly young girl. She seems to have charmed many with her affections and even her smile but deep beneath all that is a very troubled little girl. Ruth came to us at 18 months of age already traumatized beyond belief. She was the unhappiest child I had ever met - she cried about 70% of her waking hours and could not be consoled. She's come a long way from there but still there's a persistent unhappiness in her, a void which can't be filled by us. Our counselor has us reading a parenting book which I read long ago and have since tried to apply the principles to my own parenting. It was in re-reading this book that I realized the depth of Ruth's pain as I contemplated the author's suggestion of using eye contact and physical touch to fill the emotional tanks of our children. Here is what I wrote in an email to the counselor about this:


I continue to read the Relational Parenting book. Unfortunately I have a terrible memory for books I have read in the past but I am certain I have read this book before and gleaned some useful things from it which I try to use in my parenting. Eye contact and touch are two things I have always made a conscious effort to use in my parenting style. They are also two things that are very problematic to me with Ruth.

She has some very strange eye contact herself. I could lose myself if I spent too much time looking into her eyes there is so much pain and confusion there and I don't know how to answer to it. A lot of times she will be staring straight at me but completely disassociated so that she doesn't really see me - just staring, staring...it's weird. A lot of times she stares at me questioningly like I am supposed to be reading her mind and meeting some need. But if I ask her what she needs from me she can't tell me. I never feel like I can fill the void in her eyes. Her eyes frighten me and frustrate me. I know why, when she draws pictures of people, they all have big vacant circles for eyes. That's how I see her eyes when I look into them - big, vacant, painful holes. With the other children I can look into their eyes and settle in on some emotion or some shared expression or experience but there is never that "settling in" with Ruth - just a deep, deep hole that can't be filled. It's creepy.

I also struggle with touch with Ruth since this is also a place where she struggles to be appropriate. I am always afraid a casual, friendly touch anywhere will illicit an inappropriate response. Often she will lean into a hug just too much or cling too close - not really obvious but enough to cause an uneasiness in me. Other times, she will lose herself in the touch. If I touch her maybe on the cheek she will melt into my hand until I practically am holding her up by the head. She craves touch but her response is so intense that I don't like to touch her. Again, I could get lost in that touch. Her need is so great I can never fill it with a single touch. I think if I just held her for a long time she might just cry and cry and cry and not know why. I don't hold her for long periods of time. I am afraid of the big vacant hole in the touch too. I can't meet her need, I can't fill the void. I am inadequate. And it's not as if I feel like if I just hold her enough or touch her enough she will eventually climb out of the hole. It seems too deep to me, it seems like I would lose myself in it before she was ever able to climb out. Sometimes I just pray that Jesus who is bigger than anything else I know will fill that void. I think He's the only one who can.


Our counselor was very taken with this description. So far he's diagnosed her with Reactive Attachment Disorder - a serious inability to attach appropriately within close relationships, the closer the relationship, the harder to attach. JT has the same diagnosis. After reading this description, our counselor was alarmed to realize that he could have lifted these paragraphs out of a textbook definition of Borderline Personality - an incurable inability to even become a whole emotional person. He wasn't giving her this diagnosis based on these few words but he was startled into the realization that Ruth needs to be counseled in such a way to keep her from falling into step with this diagnosis as an adult (it is not a diagnosis given to children anyway). Her prognosis suddenly got slightly dimmer.

Of course God alone can fill this void in her but we know that hard work, consistency, boundaries, love can begin the process. But, truly, our love is not enough.