Saturday, June 11, 2011

Remembering and Celebrating

I spent this morning looking back through some of my previous entries that spoke of our journey raising Naomi like Willing to Try, When it Rains, Be Still My Soul, and Love Without Boundaries. I wanted to remember the journey so I could celebrate our progress to the fullest. It is strange how we can cry out to God in so much pain, but when his relief comes slowly and incrementally we can so easily forget to thank him. At first we don't thank him because the relief is so little, and by the end we don't thank him because we've forgotten the pain we were once in. Today I am setting up some stones of remembrance because I do not want to forget his deliverance.

Naomi was a fearful, angry baby, unable to sleep for more than twenty minutes at a time, and utterly unable to calm herself down once a fit had begun. She was a brilliant, but withdrawn toddler. She rarely made eye contact, refused to interact with others, and stuttered severely for two years as she struggled to get out long, complex, adult-like sentences. She was thrown into wild, uncontrollable tantrums at little things like her blankets not laying perfectly straight on her bed. She was unresponsive to discipline; it did nothing to curb her compulsions or end her tantrums. She could only function in the most structured and routine environment--the exact same activities in the exact same manner at the exact same time of day. Any deviation from the norm required extensive coaching beforehand on what Naomi should expect to happen and how we expected her to behave. Routine so ruled her world that after receiving a spanking for getting out of bed several nights in a row, she began to get out of bed each night and request her spanking. It actually upset her more if we didn't spank her.

When she was one and a half she tested at the cognitive level of a three year old, and when she was two she memorized the entirety of Psalm 1 with an elementary church program, but she refused to recite a word of it with her class. At two and a half she could sing her English, Greek, and Hebrew alphabets, would listen intently as we read to her for hours, but flew into a rage at the feeling of dry rice between her fingers.

When she was three we moved to a small Christian boarding school in Iowa. The other two children her age on campus would try repeatedly to get Naomi to play with them and Naomi would refuse to answer them or acknowledge their existence. She would spin incessantly in circles whenever music started playing, and Matt would have to carry her out of the church service screaming when we asked her to stop spinning in the aisles. One time she was spinning to a favorite CD in our kitchen when I left for a campus duty, and I found her still spinning when I returned an hour and a half later. Matt said she'd been there the whole time. Every day was one discipline battle after another. Some days I wondered if I would ever enjoy my daughter or if she would forever be locked in her own, defiant world.

Light began to shine on Naomi when she was four. I think the very predictable routine of campus life along with the limited number of people she interacted with day-in and day-out began to help her. Eventually those two other kids won their way into Naomi's life and she began to talk to them, and then to play near them, and eventually to play with them. She was happy that she finally had friends. She attended an elementary level art class once a week with a very understanding teacher and began to learn the rules of classroom interaction. She learned she could help with chores like folding laundry and emptying the dishwasher, and she began to spend hours working in kindergarten and first-grade workbooks. These accomplishments brought her great satisfaction and pride, and brought a great measure of relief to us. But then she would have episodes of being utterly irrational, unreasonable, and defiant no matter the cost to her. Nothing we did could break into that world, something held her mind captive.

Naomi had just turned five when the economy nose-dived, the boarding school enrollment dropped by two-thirds, our dormitory was closed, and we moved to live with Matt's parents. This sent her spiraling backwards. We decided to enroll her in kindergarten at the nearby public school knowing that being thrown into the ocean of social interaction would either sink her farther down or teach her to swim. Naomi was sent to the Principal's office only a few days into the school year because she refused to count buttons for the teacher. Whether the buttons were an offensive shape or size, or whether the activity just seemed too pejorative to Naomi we'll never know. We met with the teacher then, and gave her some tips for working with Naomi, and the two of them "clicked" after that. By the end of kindergarten Naomi was participating in group activities (most of the time), performing in class shows, and talking to other kids in the class freely. I held my breath that spring as Naomi was approached by a new child at a playground and asked to play. Naomi looked up at the boy, said, "Sure," and ran off happily to the slide with him. I could have cried at that milestone.

Then last summer she again spiraled downward. Her joints began to hurt, her frequent stomach aches intensified, and her tantrums grew more frequent and more violent. She was getting too big for me to physically control. She broke three support boards in her toddler bed from pounding her body down on it in rage. We learned quickly to confiscate her glasses at the beginning of a tantrum. When we got bunk beds for the girls Naomi would lay on the top bunk and kick the ceiling, screaming with all her might for over an hour. We would sit helplessly upstairs and wait for it to pass. Sometimes Matt tried holding her locked in his arms as she screamed and shook and kicked and foamed at the mouth just to keep her from hurting herself or others or property. She would burst blood vessels all over her face from her intense screaming. The tantrums became almost daily, especially if the routine changed or other children were around. I became convinced that we were dealing with far more than a "strong-willed" child or a discipline issue. I pushed Naomi's doctor for more tests and that is where my blog entries pick up last September with the diagnosis of Celiac disease, the introduction of a gluten-free and casein-free diet, and the beginning of improvement for Naomi.

The blog doesn't tell it all though. I didn't really mention that the tantrums grew far worse after the first week of diet change, or that her school teachers didn't have a clue what to do with her. She was far too academically advanced for special education, but she was causing enormous disruptions in the classroom and refusing to heed discipline. The tantrums finally made their way to school, something I had dreaded happening. Once, after she had refused to pack her backpack at the end of the day, Naomi's teacher left her alone in the classroom while she escorted the other children to the bus. When she returned she found Naomi had overturned desks and tables leaving the room an enormous mess. We had to discuss signing a waiver for a special education teacher to restrain Naomi if needed.

About this time we had to admit that Naomi was no longer thriving in the public school system, Matt was able to finally find a new job, we were able to move into our own home again, and things started to fall into place for Naomi. Having our own, calm, structured environment again; letting Naomi set the pace for her learning in home school; and making a few more dietary changes have made all the world of difference for Naomi. I want to tip my hat to a friend, Marlene, who sent me some gfcf cookbooks awhile back. One of the books on special diets for Autism and ADHD treatment helped me to understand Naomi better. It talked about how children who don't improve on gluten-free, casein-free diets likely have even more foods they are reacting too. It gave the analogy of a child sitting on six tacks, and how removing two of them wouldn't lessen their pain very much. From that point I've been searching for the remaining tacks. Amazing improvements came when I removed most soy, and finally all artificial food-dyes from Naomi's diet.

I've been hesitant to announce our success too publicly, for fear that Naomi will regress again, and I will have to admit I was wrong, but at this point the evidence is indisputable in my mind. As long as the diet is followed Naomi is engaged with her surroundings, capable of thinking logically, and generally well-behaved with a sweet disposition and a big heart. When I've let Naomi have dairy she now develops dark purple shiners under her eyes and has about 24 hours of low responsiveness, irrational thinking, and defiance. When Naomi consumes food dyes she has extremely aggressive behaviors, headaches, and joint pain within one to two hours that last for a few hours to a few days depending on the amount of dye consumed.

This is what I needed to remember in order to appreciate yesterday. Yesterday Naomi and her sisters enjoyed watching me make my own food dye from mashed, strained, boiled-down cherry juice. They helped me top the gluten-free, casein-free, artificial-dye-free birthday cake with fresh cherry and kiwi slices. Naomi offered to unload the dishwasher for me as we cleaned up the kitchen together. And then we attended the first family birthday party ever that included no temper tantrums, no headaches, and no joint pain. Naomi played well with her cousins. When they irritated her she let it slide instead of launching World War III. She even played happily with a neighbor girl who came to join the party. She went to bed tired and fulfilled. There were days last year when I wondered if this day would ever come. I went to bed quietly thanking God.

...they were at their wits’ end.
28 Then they cried out to the LORD in their trouble, and he brought them out of their distress.
29 He stilled the storm to a whisper;
the waves of the sea were hushed.
30 They were glad when it grew calm,
and he guided them to their desired haven.
31 Let them give thanks to the LORD for his unfailing love and his wonderful deeds for mankind.
32 Let them exalt him in the assembly of the people
and praise him in the council of the elders.

--Psalm 107:27-32

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