“Stones of Remembrance
“We were preparing to move and the girls were selecting the best of the best from their rock collection remarking over each red speckle, green stripe, and sparkely lump that made the paring down process virtually impossible. With a sigh and a smile I turned over several of my own stones of rememberance found the last two years in California. I remember when we were seeking the Lord about our move from Texas to California.

“We were at a real crossing point, and we needed confirmation before making such a radical move. In my daily reading, I had come to Joshua 1, where God is encouraging Joshua as the next leader of Israel with the words, “Be strong and very courageous, I am with you.” Later that day, Jason mentioned that a student had handed him a note after class. He’d forgotten all about it until he found the paper in his shirt pocket while sitting in church. The scripture referenced the same portion I had just read. Okay, that got my attention! We were on the right track, but what did we need to be strong and very courageous for???

“I wasn’t sure I wanted to know. Here we are, not quite two years later, and I can see how much the Lord was gracing us with His courage, His strength, and His awesome peace. Three months after we moved, my Dad went home to dance with Jesus, our 4th child, Samuel, was born with a hole in his heart requiring open heart surgery at 6 months. One month later, our third child, Jack, was diagnosed with autism.

“Now looking back on this intense period, I can see that God supplied the strength and the courage to carry us through. We have been bathed in the prayers of hundreds of family and friends of friends. Samuel’s completely recovered. Surgery couldn’t have gone better. The Surgeon patched the hole, removed blockage in the pulmonary artery, and completely rebuilt a valve using Sam’s own tissue. Later, the technician running the echocardiogram had to ask the cardiologist which valve had been rebuild; it was indistinguishable. Our hearts are so thankful.”

Wow! What an intense, rocky period in our lives: the hardest we’ve faced so far. We’ve come farther in the last two years than I even knew was possible. Of course, we hoped for an instantaneous miraculous recovery, and we are far from it, but Jackson likes us, is talking, is following directions (most of the time, unless he doesn’t want to!), and is showing that he understands us most of the time. We have learned so much in giving him processing time, using strategies to get language and communication out of him, and understanding better how to teach him to be more independent. I’m thankful that seasons change, and we know Jack has a future and a hope because God is with us. He breathes hope into us day by day, and from one moment to the next pours strength into us. We can be strong and courageous, because we are not facing this alone.

When we finally figured out that Jackson apparently did not have seizures (at least for now, the neurologist maintained), it was back to the drawing board. Our developmental pediatrician was not satisfied that his regressions were of the typical, cyclical sort that many children with autism experience. He had run a thorough panel of metabolic and genetic tests to rule out the big scary metabolic or genetic disorders. He was out of ideas, so he referred us to a metabolic specialist.

Again, I wasn’t hoping for an ailment, but a potential answer and treatment approach (aren’t we all)? This appointment lasted all of 20 minutes (after 20 minutes of Jackson playing in the sink and completely soaking his shirt while waiting). After a careful physical examination, the doctor all but apologized for the lack of research on autism, and any clear answer for Jackson’s regressions. He felt confident, though, that we had ruled out any scientifically testable metabolic disorder. “We just don’t know.”

I left the doctor’s office feeling deflated, but realizing traditional medicine and research I desired was possibly five to ten years too late to help me…I was ready to look for other solutions.

We’ve been trying to figure out the reason for Jackson’s severe regressions for about a year now. Last November, an MRI ruled out tumors and brain damage the big scary…Now we were focusing on watching for potential seizure activity.

When most of us hear the word “seizures” we picture someone falling on the ground and shaking uncontrollably, but these are grand mal seizures. Actually many seizures can be much more subtle than that. There are absence seizures which may be just a disorientation or unawareness while someone is still active in routine. My mother was diagnosed with this type of seizure as a young adult. She would be walking out of a college class and find herself minutes later in another place not knowing how she got there. After asking the doctor, “If a big mac truck came down the street, would I stop crossing the road for it?” “Probably not” replied her doctor. She was on medication for a while to control these.

The other even more subtle type of absence seizures only last 2-10 seconds and look like the person is staring off into space. Usually there is a pause in activity and speech, sometimes a bit of disorientation, and then the person resumes activity or speech as though nothing happened.
We spent months tracking these staring episodes at home as well as at school. 2-10 second staring episodes are tricky to identify with any child who might be sleepy or is often unresponsive much of the time, but we did catch him in several episodes where we could not get his attention by calling his name, clapping our hands or even touching his cheek or arm. Sometimes he would stop in the middle of humming, running, or echoing his favorite movie, pause for a few seconds, and then resume.

I looked up several youtube videos of absence seizures to help me get an idea of what I was looking for, and that really helped. It’s way easier to identify when your child is verbal and socially connected as in several youtube examples I found, but it still helped to see how subtle they could be.

Armed with our seizure log, I went back to the neurologist, and he told us to call him as soon as Jackson entered another regression (indicating possible seizure activity), and he would authorize another longer study sleep-deprived EEG.

The waiting was awful and depressing, but it didn’t take too long. In January Jackson was sick and then my husband was out of town, so I wasn’t sure if the regression was due to that, but it was so stark, I thought there had to be something else behind it. All the classic signs we had seen before: little or no language, any speech I could get out of him was muddled and missing all consonants, nighttime wakings, high distractibility, unresponsiveness, and lots of accidents. I was sure this was the “real thing.”

The EEG was scheduled for the next day, so I scrambled for an early morning babysitter (6:30), I woke Jackson up at 2 a.m., and planned for a 3 hour journey to hell and back. We had undergone a 35 minute EEG earlier last year that was “inconclusive” and run by a technician who was…not my favorite. It should have lasted at least an hour to get a full 45 minute sleep cycle and include a strobe light test. After finally getting Jackson to sleep and without pulling out the 23 electrodes that had been placed one by one onto his head while I and Jackson’s teacher physically held him down (10 minutes of screaming and writhing), the technician woke him up after only 20 minutes of sleep and skipped the strobe light part of the test because “the lamp [was] broken.” Desperately trying to keep his hands from tearing off the electrodes, I didn’t argue with her, but later found out it may have been the most important part of the whole test for Jackson…

For round two of the sleep-deprived EEG, I was determined to stand firm and get the whole picture, no matter who I had to argue with or talk down. I was bitterly disappointed to see my not-so-favorite technician walk through the door and proceed to harshly scrub 23 spots on Jacksons head which took 30 agonizing minutes to set in place this time for some reason. After 20 minutes, I couldn’t hold back my tears, and I vowed never to put him through that again. When she asked me over Jackson’s cries for a second time how long the doctor wanted to monitor him asleep (after I already told her and the receptionist that the neurologist specifically said he wanted 3 hours of Jackson’s sleep cycle recorded), I thought I might have some repenting to do. I took a deep breath and repeated his instructions also asking if medication might be in order to help him stay asleep since the doctor had also mentioned this. She vaguely nodded and exited the room to leave me vainly attempting to lure Jackson to sleep with his bedtime “soaking” music playing in the background and his favorite softy Pooh blanket wrapped snuggly around us both.

After about 20 minutes of struggling and crying, Jackson finally drifted off into peaceful slumber. Another 30 minutes later, I found myself desperately needing to use the bathroom. Inch by inch, I carefully attempted to dislodge myself from Jackson’s sleeping body and creep into the bathroom which was only about 8 feet from the bed. To my horror, Jackson stirred, and I gently lept up on the bed pretending I never had left in a vain attempt to drag him back to sleep mode. He didn’t buy it, and I still needed to pee…so I dashed in the bathroom and back to the bed as quick as a wink to give the sleep thing another go. After another 30 minutes, my technician friend came waltzing in, saw he was awake, and yet again asked how long the duration of the test should be.

Wanting to scream in frustration, but biting my tongue, I reiterated his instructions and suggested that she check his orders. Knowing Jackson would not go back to sleep on his own any more, I also asked for medication as the doctor suggested. “Oh he didn’t write an order for that. I’ll have to call him.”

Great idea. I sighed as she shut the door and clutched Jackson tighter trying to keep wandering fingers from tugging at those annoying wires, and tape, and glue. We waited like this for another 30 minutes, me assuming she was calling the doctor, only to be disappointed when she re-entered the room saying she had been checking on another patient and hadn’t called the doctor yet. I screamed internally, and asked God to save me again…and willed my aching arms to stay strong. Jackson was really irritated by now. That may have been the longest he had ever been contained to one place while fully awake since the last time he was sick. Wildly searching for any way to keep him distracted, I chatted about his brain and the lines on the computer. I finally let him touch the tape and electrodes as long as he didn’t try to peel them off. That actually helped him relax a bit.
Finally another 40 minutes later, the technician came back in armed with the sleep inducing stuff, which took about 10 minutes to kick in. I tried not to think about how we had just wasted the last 3 hours, and we should have been out of there by now. This time I didn’t dare move a muscle, no matter how uncomfortable I felt. 2 1/2 hours later, the lights came on, and we dragged ourselves home.

After that horrific experience, I almost hoped for something definable to show up. I know, you never hope for seizures, but I just wanted an answer. The results: no clear seizure activity, but definite language processing misfiring in his left temporal lobe…evidence of the processing issues we were well aware of. I was left with a sense of just having put my son through hell for no good reason, and praying that he would forgive me someday, and not have it come back to haunt him 50 years later during a counseling session…What’s a mom to do?

A year ago, we started looking at seizures as a possible cause for Jackson’s severe regressions. Every child seems to regress generally when routines are disrupted (say during summer months when not in school) or structured times and schedules are not in place. Jackson is no exception to this rule, but he doesn’t flip out when not following a routine…he just meanders. He becomes a wandering, withdrawn little guy who would rather amuse himself by flipping socks in front of his face for hours. He needs directed play to remember that: oh yeah, people and toys CAN be fun.

The regressions we’ve been more concerned about are not these general declines where language and social interaction decreases, and independent routines go by the wayside. Instead, we’ve been unnerved by very dramatic regressions that pop up “out of the blue.” These regressions are marked by an across the board down hill spiral that happens over night: one morning he’ll wake up and not seem to remember any language from the previous day, not remember how to make requests or complete tasks he did yesterday all by himself (or with minimal prompting). We usually see several nights of interrupted sleep or EARLY morning wakings (we recently started 3 mornings in a row at 4 a.m.), and notice a huge reduction in his attentiveness and responsiveness. Often we see unexplainable emotional outbursts that are unusual for Jackson, and a tendency for urinary accidents.

Last fall, Jackson’s teachers documented several times when he was lost in a
“staring episode” lasting only a few seconds. They are trained to catch these because seizure activity is also a potential cause for severe regressions in children with autism. So based on the school’s recommendation and documentation of these episodes, our developmental pediatrician referred us to a neurologist.

After months of tracking staring episodes and headaches, the neurologist decided to have Jackson undergo an MRI, which surprisingly went smoothly. I had researched the medications used for anesthesia, and found many children with autism react negatively to some medications used, particularly pre-anesthesia medications because they are given in a specified dose which may be too much for their sensitive systems. I firmly rejected the pre-anesthesia medication on the condition that I could be in the MRI room until he was actually asleep after breathing in the gas. He did fine and was out quickly. After all that, the MRI showed nothing negative, which was a relief even though it felt like I had subjected him to something unnecessary. But better to rule out some of the worst case scenarios, right? The MRI ruled out brain damage and tumors. Now we were on to looking more closely at seizure activity…

About a month ago, Jackson started hitting his head again. He hasn’t done that since his “catatonic stage” when he first showed signs of withdrawing and regression, pre-GFCF diet. The bumper of the van, the corner of the dresser, every doorpost in the house planted their mark in the middle of his forehead, and before long, the school was sending notes home asking about the giant purple bruise on his head. We, of course, were disturbed by this self-injurious behavior and interrupted the head-banging as soon as possible, but after one or two hits, Jackson looked like the loser in a boxing match.

My first questions were “Why is he doing that?” and “How do we make him stop?” We tried redirecting Jackson to a different activity and/or room to disrupt his focus on hitting his head. That worked some of the time. I tried watching and mentally recording where he was and what he was doing to see if I could figure why he would engage in such self-injurious behavior. Everything I had read so far suggested that children engage in head-banging for three reasons: 1. to get attention 2. to “ground themselves” when sensory input becomes too overwhelming 3. to get an endorphin rush.

It didn’t appear that Jackson was trying to get our attention, since he mostly attempted to hit his head when in another room by himself. Jackson tends to be under-sensitive to stimuli rather than overwhelmed by it, so it didn’t appear he was hitting his head for the second reason. The last one was a possibility, but how could we know for sure if he was hitting his head for the endorphin rush? It didn’t seem like he had been allowed to head-bang for long enough to experience any kind of rush, and I began wondering if something else was going on.

Was there some other pain or sensory confusion he was trying to drown out by hitting his head? Was he role playing something from a movie? Single head-banging attempts often happened during a movie when the character fell over or was getting hurt.

Soon I suspected headaches because when I moved toward him to disrupt head-banging, I put my hand on his head. He would grab my hand and put it back on his head, echoing my question, “Head hurt?” He started doing the same thing at school, pulling the teachers’ hand to his head, wanting them to press down firmly. One teacher wrote, “Jackson was taking my finger and poking it at his head.” I thought, “Do you really want pressure on your head, or are you just trying to point to your head?”

When I mentioned this to the pediatrician and neurologist before, the behavior was dismissed as “typical behavior for children with autism.” So frustrating since if any of my “non-autistic” children started banging their heads, they’d be undergoing a panel of lab tests to look of potential mercury poisoning or some other issue.

Now armed with new observations, and more determination to find answers and relief for Jackson, the neurologist prescribed Nadolol 20 mg for headaches. He’s been on it for almost 2 weeks, and the only time we’ve seen head-banging is when it’s time to take then next dose.

I still wonder if it’s something he’s eating that we’ve missed, but I can’t seem to track it down. Maybe some newly developed sensitivity? We saw so much head-banging while Jackson was still eating dairy and gluten. Head-banging completely disappeared once those offenders were removed from his diet.

The school recommended using a helmet to protect his head when he does try to head-bang. We use a bike helmet, but it has become more of a deterrent. He does not like wearing it. Immediately after hitting his head one time, the helmet goes on for 15-30 seconds. Jackson will ask to take it off, and repeat, “no more hitting head.” Off it goes, and he usually does not attempt to hit his head again that day.

I still feel like we may be missing something, but at least Jackson is trying to tell us something. I wish I could hop inside his head for a bit just to find out what’s going on. Just want him to know, “I’m listening, honey…Just trying to figure out your lingo. Thanks for being patient until I learn.”

Let me hear your voice

Wow…we left this blog on a downer for three whole months. Yikes. Thank God we’re back with hope in our hearts. It’s been a rough go, but Jackson has indeed risen again. He is using more spontaneous language than ever before. Hurrah!

Today, as I was driving Jackson into school and preparing to meet with his teacher for a mid-year review, I prayed a simple blessing over Jackson. I watched him in the rearview mirror, and as I prayed a huge smile crept across his face. I wrapped up my blessing with a cheerful, “Amen, Jack?” He gave a saucy grin and said, clear as day, “Yep!”

So…the past three months on our medical journey with Jackson have been focused on trying to figure out the why behind his serious regressions. He will go through a week or four making one to three word spontaneous requests, imitating practically everything we say, interacting, following directions, completing many routines almost independently, and then, BAM! He’ll wake up the next morning and look at me with that spacey look, pull me by the hand and stand helplessly. Waiting…unsure how to ask for the waffles he’s asked for over 100 times before. The words are just…gone.

I’ll shake my head at this altogether different boy standing in front of me who now couldn’t care less about interacting, would rather stim and stare and must be reminded 10 times that he’s in the bathroom because he supposed to “GO POTTY!”

Then slowly over the next days, weeks, and months we get it all back again. 0-10 spontaneous words expand to 15-20 a day, imitated language skyrockets. He’s an engaging, smiling, connected Jack again, and we even start moving forward, carefully, hopefully…waiting to see if this time it’ll stick.

Now the Neurologist tells us to “wait for another regression, and we’ll do a longer EEG” not knowing how crushing that waiting is. He’s ruled out brain tumors and brain damage with an MRI and metabolic disorders with lab tests, now he’s looking for seizures. Not the fall on the ground shaking kind (grand mal), but absence seizures, where the seizure-sufferer just blips out for a few seconds, staring into space, utterly disconnected, then returns. Apparently these absence seizures can cause regressions like we’re seeing in Jackson.

The problem? It’s one thing to see an engaged four-year old break off his conversation and eye contact for a few seconds mid-sentence, then resume as though nothing happened. How do you catch that when your four-year-old rarely GIVES the engaged eye contact and more than 10 single-word utterances in a single day? These 2-3 second blips are easy to miss when he’s more interested in staring at the socks he’s whipping madly back and forth in front of his face. Still…we have caught him staring and been unable to get his attention for several seconds: call his name, clap your hands, touch his face…no response. That’s cause enough for the Doctor to order an EEG. Now we just have to wait for the next downward dip that may indicate increased seizure activity. Not much to look forward to, but still something to hope for…

Do I hope for seizures? Not on your life. I just want an answer. Then we can move forward. I just want to move forward. I want to hear his voice again loud and clear. “Are you with me, Jack?” “YEP!”

But how do you communicate this stuff to the world without sounding melodramatic, like an After-School Special? This isn’t an “Our Life Is Harder Than Yours” type of website! Every family has its own significant challenges. This autism thing is one of ours. And what would the point be to go into detail? It doesn’t do any good to vent and ruin someone else’s day.

Then again, the point of a blog like this is to give you a real glimpse into our world, which is probably quite different than yours. So for the sake of honesty, I’m just going to say it: this sucks. He’s not looking us in the eye, he’s not even responding to his name most times! For a parent, this isn’t fun. It sucks. Period. No sympathy requested, no violins needed. It just sucks right now.

And yet I can’t leave it at that. We’re pressed, but not crushed. Struck down? Maybe. Probably. Yes. But we’re not destroyed. Jack will ride the high waves again, and he will move forward. His words will come back, and eventually, he will understand how to put his poopies in the potty and not on the carpet (yeah, it’s been a long day…) And eventually, I will learn to embrace him just as tightly in the downtimes as I do in the ups. He deserves that at least. Because ultimately, Jackson is God’s son even before He is mine.

I’ve tried and tried and tried to be good, to measure every ingredient, mix it just so, and include every item on the list. But there’s that little voice that says, “What if we tried to use almonds instead of walnuts, why not juice instead of milk, what about adding a little flax seed to these donuts to give them at least a little nutritional value? This little jar looks about half a cup. What will happen if I just leave that odd ingredient out that has never ever inhabited my cupboards, I mean who’s gonna miss half a teaspoon of “cream of tartar” anyhow?

The result of almost anything I whip up in the kitchen is rarely the same twice. Hence my delinquency in posting new recipes. I hate measuring and actually recording what I’ve thrown together. But, for once, I’ve tried to follow a recipe a second time to make sure it will really work. Here’s a recipe I’ve stolen from a church cook book and modified beyond recognition. I made it again today (struggling frightfully to follow my own recipe) to make sure it won’t end up a brown lump stuck to the bottom of your pan.

Jackson loving refers to these as “Bar?” The intonation echoes my oft-repeated question, “Jackson, do you want a bar?” And everyone in our family will eat these!

Bars
1 cup prunes, softened and smashed (opt.)
2 eggs
1 cup organic peanut butter
1 cup raw organic sugar
1/2 cup ground raw almonds or almond meal
1/2 cup ground raw sunflower seeds
1/4 cup ground flax seeds
1/2 teaspoon vanilla
1/2 teaspoon molasses
1/3 cup canola oil
1 1/2 teaspoon baking soda
3 cups oatmeal (make sure it’s GFCF, I use Bob’s Red Mill)
1 cup chocolate chips (GFCF)

Mix all ingredients thoroughly except oatmeal and chocolate chips. Stir in last two ingredients and pour into a 9 X 13 inch pan for bars or form dough into cookie balls and drop onto cookies sheet. Bake at 325 for 20-25 minutes for bars or 8-10 minutes for cookies.

Optional Topping:
My oldest daughter came up with the brilliant idea to add more chocolate and peanut butter to send the yummy factor over the top! We melted about 1 cup of GFCF chocolate chips (we love Enjoy Life brand) and stirred in about 1/2 cup of peanut butter and smoothed it all together over the top of the cooled bars. YUMMY-licious! Super messy when eaten as a finger food, but soooooo worth wiping chocolatey fingerprints off the dining room chairs!

It’s like a disease: I think I will always include substitution suggestions and ample room for experimentations or warnings when my own creativity failed (or my rebellious vice was my downfall). Not to encourage similar rebellion, but…feel free to NOT follow my recipe, and send me your suggestions!

For more info on the GFCF diet check out these links:
Autism and Diet
Autism GFCF Diet: How Long?

No Debate at Crater Lake

A few weeks ago, I dipped my toe into rougher waters in the world of autism. I attended a parent advisory meeting at Jackson’s school. The discussion had turned to providing more training for parents, equipping them to reinforce their children’s training at home using the same methods employed in school. One mom’s response revealed a new side of the autism debate of which I had been blissfully unaware.

She ademantely declared she didn’t need more intensive parent trainings because she wanted her daughter to feel comfortable being herself at home. She wasn’t interested in employing school training at home because she wanted her daughter to feel like home was a sanctuary, not a work place. She was convinced that rigorous schedules and training at home would somehow convey to her daughter that she was unacceptable and unloved unless she preformed. While I agree with her take on home being a sanctuary and place of acceptance, I couldn’t help shifting in my seat at the thought of my son and our home without schedules, without constant intervention tactics, without intensive home support of school training. Sanctuary would certainly fly out the window, and not just for Jackson.

Stop the expectations at home? Don’t provide behavioral support? Stop teaching my child? Seems the opposite of love to me, especially for our children who need consistency. Since vicariously picking up social cues and desiring to imitate and please parents and peers are not functioning in Jackson, schedules, pictures, and consistent expectations, along with lots of praise, hugs, and cheering are key to his learning. Without these…I shutter to remember life two years ago when we started to lose Jackson: glassy-eyed gazing out the window, cut off from us, and our helpless attempts to draw him back into our lives, our own sense of lostness. I am so thankful for the strategies we’ve learned, and I must use them at home. They are not just producing results, they ARE the WAY he learns. He is thriving and relieved to finally make a few choices on his own, to know a few words to request essentials like “water” and fun interaction like “tickles.” We use these strategies because they work for Jackson, and because I love him too much not to do all that I can to give him the tools to be all that he can be and to be as connected to our family as he can be.

The more I read from parents in the autism community, the more I am torn apart by the divisions I see. Even our blog subtitle is apparently controversial: fighting autism at home. Some would argue we shouldn’t fight autism as though it’s some abnormality that needs to be gotten rid of, we should accept it as who our son is, who God has destined him to be. Sorry, that seems a little fatalistic, and I just don’t buy it. What 4 year old is all that God has designed him to be? I wouldn’t follow that line of thinking for any of my other children, why would I treat Jackson differently? My job is to help him discover who he is, what his potentials are, his hopes and dreams, talents and loves, his calling and purpose. It’s my job to teach and empower him to go after them. Not to be some version of “normal” but to be all HE is able to be. How can I do this if I stop working to learn who his is, or stop letting him experience all that he can, learn all that he can, or build relationships with the people in his life?

It’s not a question of love and acceptance. I think we’d all agree, acceptance isn’t some pass for not parenting. Of course I love and accept Jackson, just like our other three children. Autism is not who Jackson is. Autism is just along for the ride, it makes learning different and Jackson’s thinking different. So the goal of our teaching is not to change the way he thinks, but to find the best ways that work for Jackson to be equipped to be all he’s meant to be and to build relationships. We were designed for relationship, if he doesn’t learn how to relate in his own way, what’s the point of existence?

If Jackson never speaks another word or learns another skill, I will love him just the same. That is my primary goal: to teach him that he is incredibly loved, and so valuable, we will never give up on him. But I’ll be a failure as a parent if I ever stop trying to teach him the rest. Because all children CAN learn. Jackson’s no exception. I love him too much to not help him discover just how much he’s capable of accomplishing. Thanks to Bob the Builder, we have a new theme song at our house, “Can Jackson do it? YES, HE CAN!”

I am able to focus on Jackson’s left eye, but the rest of his face is fluid, moving, jumping. My brain feels mushy, and my lips thick. I focus hard on that left eye, trying to hear what he’s whispering, “I want….” What is my prompt again? So hard to concentrate.

Is this what you feel like most of the time, love? I wish I knew. I’m glad I had a headache today if only to remind me to slow down, be patient, wait for your response. Remember that your efforts are valiant. Your victories worth celebrating. You’re a tough little fighter, buddy.