Tuesday, March 20, 2007

Spring break

I’m beginning to hate breaks from school. Hard to believe I’m writing that, but it is true. I mean, getting to visit family, do some out-of-the-ordinary things and not have to keep to a schedule is nice, but it also really throws T off. With all this down time (and the weather outside being cold & gloomy), his days are spent going from one stimmy activity to another.

So play with him, you might say. I say that to myself, too. It’s not like I ignore him, but here is how it goes:

I get up in the morning when I hear him start to coo. He’s peed through his overnight diaper so I make a mental note to change & wash the sheets as I take him for his morning toilette. But first it’s down to breakfast and the assembling of all the supplements: mixing some in nut butter which I have made, stirring some in juice in a sippy cup (did I remember to wash one last night, or are they in the dishwasher?) Damn, I forgot to run the dishwasher – or I ran it and have to put the dishes away. Start to peel his fruit and assemble his SCD (Specific Carbohydrate Diet) breakfast…there goes T over to the heating vent to rub his hands over it and grunt & grind his teeth. “Come on over here, sweetie, it’s time for breakfast.” Okay, here he comes. Ah, he’s eating. Check off the supplements & meds he’s had from the list I have on the fridge. Unload dishwasher – or run the thing if I haven’t already. Put tea on for me – coffee gives me headaches now. Curse you, caffeine gods. Encourage T to come back to the table again. Go upstairs while he’s eating to get his wet sheets. Take to washing machine – sonofabitch, there’s still wet wash in there from yesterday and the clothes in the drier aren’t dry yet. (I probably forgot to turn it on. Rob can confirm this for you.) Leave peed-on sheets in laundry room until later. Look at the clock, but it doesn’t matter – no therapist is coming today to keep him occupied. It’s all up to me today. Okay, start making my breakfast – I do have to eat. T is done with his and he’s off to the heating vent again, or downstairs to find something to spin. Take a few minutes to read the paper and watch Good Morning America as I eat my oatmeal with a side order of guilt while I hear T downstairs by himself. He’s grunting and grinding his teeth; he’s found something to stim on. Finish breakfast & go downstairs, check on laundry in drier. It’s dry now, so I pull it out, lay it flat so it won’t wrinkle but I don’t have to fold it right away & put on sofa. Finally put peed-on sheets in wash. T still stimming. Would like to shower, so I put on a video for T. On the way to said shower, I walk by computer and check email. Should be showering, but I’m not. Finish responding to email and video is over. Haven’t showered. Put another video in or turn on PBS and get in shower. Dishes from breakfast haven’t been done – kitchen is a mess. That will have to be cleaned up at some point, but I have to get in the shower. Okay, now I’ve showered. Dishes are waiting to be cleaned, so I do it. T is now going on at least 60-90 minutes in front of the TV. Great. Remember a recent posting about Baby Einstein viewing causing autism and curse the stupid people who wrote that rot. Go downstairs to play with T, and he’s happy to see me (joy of joys) but the stimming monster has set in and it is hard to break. Hard to get him to break out of that. Remember that I wanted to look at new recipes for his diet, so I go to the computer and fall into the abyss of checking the new posts to the Specific Carbohydrate Diet group & recipe websites, all the while telling myself that I’m helping him by doing this. I am, but clearly I could be trying to play with him.

And this is only 10:30 a.m. The rest of the day is similar.

Honestly, sometimes it’s easier to do all these tasks instead of trying day after day, moment after moment to connect with my son. Don’t get me wrong – I do connect each day, several times. And when I do, there is no better high than that. It’s just hard emotionally, and some days, it’s just easier to sit at the computer and research. Especially when it’s all me all week.

So spring break ended and we are now getting back into the routine. What a relief.

Poem "to my son"

This poem showed up on one of the many Yahoo Groups I read. Sums it up very well (although I'll admit it nearly killed me not to edit the crap out of it!)

to my son with autism,
so sweet and unique.
i pray some day you will speak.
i watch you grow and smile at me
trying to figure out how life would be.
you have autism, which you struggle with every day
but mommy is trying and will continue to pray.
you look so happy with smiles on your face.
if I could take away the confusion, I would take your place.
i love you son more than I can say.
your love is so so real in every way.
your progress is slow, and sometimes very hard to understand.
but no matter what I will hold your hand.
i reach for the stars every second I breathe in a day.
my dear boy, I am so proud of you in every way.
you look at everything so pure and real.
i wish I could understand how you feel.
please talk to me sweetie, just let me know.
it will happen, even if it’s slow.
god bless my angel, be with him today
as I will continue to pray...
melissa seavey

Wednesday, March 07, 2007


I don’t want to jinx anything, but we’ve had a few good days in a row here. He did his fabulous belly laugh today for the first time in ages. He’s smiley and happy – still stimmy – but it isn’t quite as obsessive as it’s been recently, just typical stuff.

He reached out for me and pulled me into a hug twice.

We’re still working on being able to call me by name, or respond consistently when asked by a therapist “Where is your mom?” I can’t wait. He can point to my picture and even pick me out of a picture of several people when asked “where is mama?”, but referring to me personally is yet to come…but it will.

As of today, we seem to be almost back to where we were before Thanksgiving. Once December came, he had a sinus infection, an intestinal bug, and then all the upheaval with his classroom and turnover of his therapists...not to mention the GFCF diet that didn’t work starting in January…poor guy hasn’t been himself in a long time. It’s good to see him coming back.

And darn it, I’m not jinxing it. He’s getting better.

Monday, March 05, 2007

Better days

T really, really watched me brush my teeth today. Those big brown eyes watched me intently for nearly 30-45 seconds, first in the mirror, then he turned around and watched me. A magic little moment.

He's also more smiley today. He wanted me to tickle him, and has prompted me to play peekaboo and our little game "Come to Mama" (where I chase him around the living room.) It feels really, really good to start seeing his personality return. I'm addicted to his smile and laughter, and I've been on serious withdrawl lately.

Online notes from a DAN! conference a few years back noted that an increase of stimming and even hyperactivity is not unusual when starting these biomedical interventions. Relief...but I'll still watch him carefully.

I'm glad to report that a different nurse is returning my phone calls now - a very kind, attentive and patient woman! That makes my nearly daily calls much easier.

Sometime soon, I plan to write a "lit review" of why we are doing all these DAN! interventions, using the labs and cross-referencing studies, books & magazine articles supporting the use of each prescription, supplement & vitamin. This will primarily be for myself & Rob, but perhaps someday it can be useful for others. I guess also it's because I like road maps and check lists, and there are very few for us right now. We're not flying completely blind, but there isn't nearly enough guidance for my comfort level here. So maybe I'll feel better if I plot out where we've been.

Off to finish the data collection for his Verbal Behavior program this week.

Saturday, March 03, 2007

What a week.

What a time this has been, since my last entry. It’s been awhile because I’ve been overwhelmed. T is on a completely NEW diet – GFCF wasn’t working for him. Also, the allergy test results (IgE & IgG) came back, and life just got a lot harder. Okay, I am keeping perspective: his life isn’t in danger, he doesn’t have a life-threatening illness, we have a house that is intact and not underwater, enough food to eat, etc…BUT…

The prescribed diet is now the Specific Carbohydrate Diet, or SCD. In a nutshell (no pun intended) he can now only eat meat, nuts, fruits & vegetables. Eggs and some dairy are allowed on this diet, but his allergy test results…sigh…show reactions to ALL dairy, eggs, wheat, rice, peanuts, almonds, and more. These are food sensitivities, not life-threatening allergies, but nonetheless, these foods must be removed from his diet; some for 2-3 months, some for 6 months, maybe some indefinitely.

So now we are doing the SCD w/out dairy or eggs. Very, very interesting.

Why are we doing this? Because when the Organic Acid Test (OAT) results came back, they showed that he had a bacterial infection and yeast overgrowth in the intestines. If you’ve got yeast overgrowth in the intestines then mucus builds up in there, and food can’t be absorbed properly. Food essentially rots or ferments in there, causing the bacterial infection. So you’ve got all sorts of infected gunk in there, the intestines aren’t working properly, and undigested proteins leak out of the gut. There is plenty of research out there that shows that there is a definite brain-gut relationship: if the gut isn’t healthy, then the body doesn’t get the nutrients it needs, therefore the brain isn’t getting what it needs, and (the theory goes) this results in brain dysfunction. Layman’s terms; my apologies to anyone reading this that is an expert in all this.

The science behind this makes more sense to me, I have to admit. We knew about the yeast overgrowth while he was on the GFCF diet, but it didn’t make sense to me that yeast or yeast-producing foods were allowed on the diet. How are we getting rid of yeast if we’re feeding it? (Treating it very well, hah hah hah.)

SCD gets rid of the yeast long term by depleting it – or not feeding it. So that means no sugar, no starchy foods (breads, grains, potatoes, etc.) but instead eating proteins and produce. It is a very healthy diet, but it will be a huge learning curve for me. Most everything needs to be baked from scratch. I said to Rob today that as I walked through the grocery today, I was struck by the fact that our T couldn’t eat most of the food in that store. Even our beloved turkey, chicken & ham lunchmeats, by Boarshead, as pure and wonderful as they are, have sugar in them. Who knew? It felt very odd, and yet I felt like I was rising above it all, walking by and knowing that “that isn’t good for my son.”

That is this week.

Last week, we had to start this SCD diet, which was pretty intense. Also, the med we were giving him for the bacterial infection (metronitazole, or Flagyl) was making him sick…only we weren’t aware. Turns out it’s notorious for causing nausea, but we didn’t have that information. Also, it’s kinda hard to know if your kid is sick if he can’t say “mama, my tummy hurts.” All I knew was that it was taking me anywhere from 20-45 minutes three times a day to get this medicine in him, and that he was not himself. (Yes, that meant that up to 2 ¼ hours each day I was sitting in front of him with a medicine dropper or spoonful of applesauce with the metro mixed in.) He threw up one of the first times I gave it to him, but that was the first time I gave it to him first thing in the morning. The nurse (she’s not so snippy with me now, by the way) advised me that I should split up the dose and mix with food, but several days later he ejected it again. Only then did I realize that the reason he didn’t want to take the medicine wasn’t because it made him sick that one time, but that it was making him nauseated ALL THE TIME.

So we’re on a new med now which he seems to be tolerating much better. Boy oh boy, he’s stimming much, much more, but (those with weak stomachs turn away) his stools are actually formed for the first time in months. GFCF made his BM’s almost diarrhea-like. And my sister, my true guiding light through all of this, said that some of the other, um, characteristics of the stools indicate that he is absorbing food well, which is good good good. Rob & I are hoping that as we continue with this med and then move on to the yeast meds that the stimming will subside. Today he stood in front of his chest of drawers, and rubbed his hands over them and grunted and was grinding his teeth. That is usually saved for the heating vents or fans.

*Sigh.* I feel like so much of my time I’m suspended between two realities…joy over progress and deep concern for the regressions.

What keeps me going with this is the glimmer of hope. This may help him. Yes, it crosses the line of mainline medical approval – most docs brush aside the DAN movement and most of the biomedical interventions. But why is it that the kids that I see that have made the most progress are the kids doing the DAN protocol and intense home therapies like ABA or Verbal Behavior? How can the blood, urine and stool test results showing these infections be ignored?

Keeping the faith. Moving forward. “Just keep swimming, just keep swimming, just keep swimming…”