Change of Focus

I’d say I’m about halfway back to my usual self. Not bad for 24 hours.

I’ve been spending hours every day researching the latest treatments for Seth’s PANDAS. I feel like I’m on borrowed time. I fear if we don’t get to the bottom of it there will be long term repercussions. How long can one’s brain be attacked without a price being paid? I’ve been making all our food from scratch, in a tiny kitchen, in the middle of a heat wave. I’ve been taking the supplements in advance of giving them to him, to be the guinea pig, and am going through detox. I love that my kids are at camp, and that I don’t have to work around them making a whole bunch of food every day. But I’m still making a whole bunch of food every day. My kids are growing and like little Pac-men, chomp chomp chomp always hungry. I can barely keep up.

Last evening at dinner, I told the kids I’d had a bad day and explained very briefly/lightly why, and my Riley put her fork down and patted my hand and said, “Mom. I’m sorry you had a bad day. You are a good person.”

The sweetness of her offering comfort to me, well.

My sister called a little later and got the full blubbery treatment. It helped, talking with her.

Take a breathe.

Today while the kids were at camp I took the little dog for a walk. I had a moment of wanting to carry a sign qualifying, “Not my dog. I didn’t pick a Chihuahua.” But then, Yippee was so well behaved and cute and appreciative, smiling as he trotted his little legs so fast. On my walk I decided to lift myself up by looking for signs of abundance.

There was an abundance of sunshine today.

And abundance of cattails on the lake.

And abundance of blue in the sky.

An abundance of leaves on every tree.

An abundance of ripples on the water.

An abundance of health in my body, step after step after step.

An abundance of time in which to walk.

An abundance of stones on the path.

There was an abundance of air to breathe.

There was an abundance of Queen Anne’s Lace in the field.

A heron waited until I was just 15 feet away before taking flight. He flew with an abundance of ease, flapping his wide grey wings.

So much is good and right.

Breath, after breath, after breath,

there is abundance.

High Fructose Corn Syrup,Red #40, Yellow #5, Yellow #6 And Blue #1.

Camp is rolling along fine, and then it isn’t.

We’ve been back on the Specific Carb Diet for a couple of months(working our butts off). The kids are eating like champs. Lunches are brought from home so no big deal. Camp gives out snacks but I send substitutes. No big deal. They tell me when it’s going to be a special occasion and I send something special for the kids. Except when they don’t. Except when they out of the blue decide to give out popsicles. And I didn’t send anything popsicle-like for my two.

Seth couldn’t care less. He ate the apple he brought. Riley does not care about the food, she’s not craving the popsicle, but she cares about looking different. The first time this happened, she took the popsicle, and held it, pretending to eat it, then gave it to a friend. I was not aware it had even occurred.

But yesterday, it was too much. She did not take a popsicle, and then she had to field questions, “Why aren’t you eating a popsicle?” The questions were too much pressure. She ran and hid.

Then a group gathered around asking if she was okay, and that was the worst. More pressure. She cried. And then got a runny/bloody nose. And got a bit freaked out because everyone was looking at her and because she was crying in front of the little kids, “And I want to set a good example!” she wailed when she was explaining the whole thing to me yesterday afternoon.

Lying with Riley on her bed when she got home, we talk it through as she decompressed. My heart ached for her as I heard the tale. I fear they won’t let her be a counselor one day, (her dream) if she has problems at camp. We come up with a plan for homemade popsicles. Her aide had suggested it that morning, and I’d already called HT at work and asked him to stop at Bed Bath & Beyond on his way home to buy the molds(I’d already driven to Target for them but they didn’t have them), but we weren’t enough steps ahead. We missed it by a breath.

And even with homemade popsicles, we are not out of the woods, because these popsicles will look different than the popsicles they may or may not give out on any random day at camp. And there will be questions about the homemade popsicles. And questions are too much. Questions put you on the spot when you already don’t want to be different.

She liked the idea of the homemade popsicles, but still wasn’t sure she could manage the questions.

I asked her, “What if there were a little camper with diabetes and they couldn’t have the popsicles. Wouldn’t you feel good that you set an example of eating something different and healthy?”

“Yes, but there are no little campers with diabetes.”

Literal.

We talked about how hard we’ve worked for her to be healthy and how hard we’ve worked to get all kinds of toxins out of her body and why would we want to dump a bunch of red-dye and chemicals back in?

She wailed, “I wish people would stop giving kids junk and then I wouldn’t have to be different! Why can’t we just have watermelon!!!” 

Some days they give out fruit and then she can partake.

I explained that I wished that too, but it wasn’t our job to be food police for the world.

I said, “Riley when you were little we did this diet for you, and our whole family did it to support you. And now, if it were only you, I’d probably just let you have the occasional popsicle, but now we are doing this for Seth. What if when someone asked you about your different popsicle, you said, “My brother is on a special diet and I am supporting him. Would that be okay?”

Magic words. Big smile. This she could get behind.

I called Seth in to make sure he was cool with this, and he was fine. Couldn’t care less.

We practiced, roll playing the scenario several times last night and in the car this morning.

Off they went to camp, with their homemade popsicles. I went to yoga.

I walked in the door at 11:09, just missing the call that came through at 11:07.

It was Riley on the answering machine.

“Mom. I’m having a hard time at camp,” she said in a sweet, sad little voice.

I called back and they said she was already back in the game. She’s fine.

I don’t know what the hard time was.

I don’t ‘effing know.

Helicopter Mom

It’s not that there is a shortage of things to write about. There are always a million things going on, only a teeny portion of which ends up here on the ole blog. Finding time has been the challenge. Doing the Specific Carb Diet consumes a lot of my life. We are eating really, really well. The kids are on board, Riley especially loves every single bit of anything I offer her to eat. Seth is less enthusiastic, but he is supportive and does not complain. After all, his health is the impetus for doing this, and he wants his PANDAS gone. His tics are a lot better. Not gone, but almost undetectable to anyone who doesn’t know him. Right now it’s a very soft, vocal throat clearing and that’s it. No body movements. He has a hard time getting his words out. It’s not a stutter over individual words, it’s a whole sentence stutter. Especially when he is excited to say something, it takes a long time to get a sentence out of his mouth. But, it was only a few months ago that his ribs and jaw ached from the constant clenching so he’s obviously doing much better.

We stopped his IVIG after a six month trial. He definitely did not get sick as much while he was getting it, but it was just a band-aid, not getting to the bottom of why his immune system is compromised and not actually healing it, which is the real goal here. He had two bad reactions, and it was traumatic for him and the whole IV thing is so invasive. It was worth a try. I have been spending every waking moment researching a new therapy that shows promise though I am hesitant to even mention it here because it is the cause for huge fights between the “bio-med” world and the “ND” world and I have been there, done that, and don’t need all the fury blasted my way.

I don’t fit neatly into either group. For the uninitiated, “Bio-med” people treat their kids medically and try to cure autism and tend to see it as a tragedy. The so called “ND” (neuro-diverse) people believe autism is just a different way of being and we should not attempt to “cure” it.

I believe the autism epidemic and the increase in other related auto-immune disorders are a result of a genetic pre-disposition, and environmental triggers with an overzealous vaccine schedule being a big player(though not the only player, for example our food supply is sick). We’re now up to one in 55 boys in the U.S. DID YOU GET THAT? (And if you are adamant that vaccines have nothing to do with it, I assume you have read very little on the subject, and that what you have read has been spoon fed to you by agencies that are bought and paid for by the pharmaceutical industry. A short list will be added to the end of this post so you can do more homework and be more informed if you choose to be). I believe that when kids with autism act out, it is because they are physically and emotionally hurting. I believe their behavior is trying to tell us something and is a call for help. I believe working on behavior without addressing the underlying reasons for the behavior is cruel. I tried my best to do my little part to educate people on this when Riley was little, and mostly people don’t want to hear it. I tired of bashing my head against the wall and stopped trying to convince anyone of anything. Rattling the cage was getting me nowhere and taking away from my ability to actually be present with my children. I am quite a sensitive person myself, and my constant anger was negatively affecting my health. I feared there would be nothing left of me to care for my kids if I didn’t back off. There is a new website called The Thinking Mom’s Revolution which has taken up the cause if you are interested in reading more from bio-med moms in the trenches. These women are full of heart.

While I believe autism is born of environmental injury, I also believe there is more going on than meets the eye, on a spiritual level. I believe souls are more powerful than we give them credit for. I believe on a soul level we all know what we are getting ourselves into. My daughter is powerful. My daughter has been my greatest gift. She has transformed me in every way. She has made me a better person. She has taught so many people so much in her young life as I write about her and share her with people, and as she moves about the world in her own beautiful way. She is not an accident or a tragedy or a mistake. She is not “broken.”

I also know it might be hard to wax so poetically about her if she were the poop smearing, hair pulling out, bashing head into walls kind of autistic person. If she never said “mama” or “I love you.” If she had no way of telling me where it hurts.

She did send me into panic attacks early on with her near constant screaming…which led us to seek out bio-med therapies to try to help her. You know that parable about the people on the roof in the flood and they keep refusing help because they are waiting for God to save them? They send away boats and helicopters etc., and they wind up drowning and after death ask God, “Why didn’t you help me?” and God’s all…. I sent you the ‘effing boat, and the helicopter,etc.. That’s right, my God can sling it like a sailor(we all make God in our own image). And She’s sent a lot of help which we’ve gratefully accepted. We’ve done a ton of bio-med therapies. Most have been helpful. Some miraculously so (Berard Auditory Training, methyl B12 injections).

When she was at her worst, I used to sit in Riley’s room at night, on a rocker, meditating as she slept, envisioning her in white light, calling all angels, “Help my child. Help her.” I would alternate between beseeching, and visualizing her well. I would talk to her soul-to-soul, “Riley, haven’t we had enough of this yet?”

And I heard, “We are healing together.” I had the distinct feeling she was holding out for me. She was transforming me. She was teaching me unconditional love. She was teaching me that people act out when they hurt. That goes for little bitties with autism. That goes for alcoholic parents. That goes for everyone. She was cracking open my heart.

Hearts are being cracked open all over the place at alarming rates, and it hurts. Transformation can be brutal.

I am not the same as I was before autism hit our family. It has been painful. And it has been a gift. AND, I will continue to do what I can to heal my children, and heal myself.

‘Cause when God sends a helicopter? You don’t have to ask me twice. I’m grabbing my family and hopping on.

Resources for you if you are interested in being more informed:  

*MMR Ruling/Daily Mail

*Evidence of Harm, David Kirby

*Healing the New Childhood Epidemics, Kenneth Bock

*http://www.safeminds.org/government-affairs/foia/simpsonwood.html

*http://www.rescuepost.com/files/prenatal-thimerosal-and-neurotransmitter-imbalances-in-rats.pdf

 

*http://sanevax.org/adverse-events-following-12-and-18-month-vaccinations-a-population-based-self-controlled-case-series-analysis/

* http://www.ncbi.nlm.nih.gov/pubmed/16988466

*What Your Doctor May Not Tell You About Children’s Vaccinations

*Vaccine Epidemic

*http://sanevax.org/

* Hannah Poling Case/CBS News

*http://www.ageofautism.com/science/

 

 

 

Craving

In the kitchen. A lot.

Breakfast today: It was homemade yogurt with fruit. I put honey and vanilla in the yogurt, then some cinnamon, and added frozen fruit to Riley’s, a homemade spice muffin crumbled into Seth’s. He didn’t love it, but he ate it. Most of it.

That’s right. Making my own yogurt. It’s pretty easy actually. Making our own everything. Todd was off for a few days and he really busted his butt in the kitchen, making three different kinds of muffins, and lots of other stuff too. He really appreciates what I do, and that is so vital to being able to pull this specific carb diet off. Support, man. It’s everything.

Seth ate two tablespoons of salad today. Seth has never eaten salad before. He eats broccolli and peas and carrots, but not lettuce. He’s trying a much wider variety of foods lately. He’s starving half the time when he insists on being picky, so then hunger works in my favor at the next meal. I feel for him.

Tonight I am craving my popcorn. I’m craving my ice cream. Luckily I rid our house of these items a couple of weeks ago.

I read somewhere recently (and have no idea where, sorry) that toxins are stored in fat. So when you lose weight, you start to release toxins, so your body craves in an effort to help you. It wants you to not have to deal with all those pesky toxins circulating through and so it sends you to the cupboard or freezer to get you to keep those pounds on. Your craving means well, but it doesn’t really serve you. You’d do much better to drink a lot of water. Maybe take something for liver support.

Tomorrow Riley has another shadow day at the school we looked at for her last month. The one she wound up having a hard time at because she panicked when they gave her a math worksheet. Our girl has been through six schools in her short life. When we first pulled her out it was so overwhelming. By the time we got tutors, I was so burned out and tired. I really didn’t care what they were doing as long as she was safe. I needed the break. I knew she was advanced academically. She needed to coast and so did I.

Lately however, I feel I have my strength back. I’m looking around and knowing she is capable of so much more than we are currently expecting of her. I am not a very structured person, and I think she needs structure. She’s the kind that would loll around in her PJ’s for weeks if I let her. If there is no routine, she is Spacey Stacy. Super smart, super sweet, Spacey Stacy.

What do I really crave?

I crave a learning environment for my daughter that will challenge her and nurture her and help her to achieve her FULL potential. I crave some stability. I want to know she’ll be okay this year, and next year and the year after that, and not subject to the skill or lack of it of any particular teacher. I want her teachers to really see her, and love her. I want love of the child to be a requirment in the job description. I want her teachers to understand fully that she is also their teacher. I want her to just become more and more of who she is. I want her to learn unafraid.

I don’t know what will happen tomorrow. I have given up thinking I know how it is all supposed to unfold.

But I crave.

I do.

Susie Homemaker

So while it has been nerve wracking and awful at times, trying to figure out what to feed everyone (Todd doesn’t like coconut, Seth doesn’t like anything), I have to admit it is quite gratifying to see my children gobbling up lentil soup for breakfast. Reaching for apples rather than cereal bars for snacks. Seth is eating so much more than he ever would before, now that his options are narrowed and sugar and grains aren’t in the picture.

And I am working hard! But I’m finding my way. In another month it will be easier, once I’ve got my system down.

This week I was reading through some of Riley’s writing for a class she’s taking and she was asked to list some of our family traditions. One of them was Thanksgiving and it went like this:

“We watch the parade, and then go over to someone’s house to eat.”

“Someone’s” house. Certainly not our house!

Isn’t that hilarious? At 43 I have never hosted a big holiday meal. I get hives just thinking about it. I’m not a natural in the kitchen. Timing is hard for me. Getting everything to be done at the same time. I am a mess, sweating. Harried. I can hardly handle just the four of us, sitting down to a typical evening meal.

It’d be a lot more fun and sexy if I were paid for all this cooking. Then again, this morning, my sweet Riley took a bite of a Paleo bread I made. It was just out of the oven, slathered in butter. She sighed, and kissed me on the cheek and said, “You are a great cook Mom!”

This girl never kissed me ’til she was seven or eight.

There ain’t money enough for that.

 

*Thanks to Melinda who not only had us over for Thanksgiving last year, but also gave me the recipe for the kiss-provoking bread. xo

The Grump Family

I have been dealing with a very bad cold since Tuesday. The kind that doesn’t allow you to sleep because so much is going in with your throat, ears, nose, sinuses, that kind of thing. Seth had it first, then Riley, then me.

It’s been hard, trying to implement this new way of eating, working like crazy in the kitchen, all while not feeling well, and also dealing with the emotions of my children who are having to get used to new food and let go of some old food favorites.

Plus, let’s not forget I too am detoxing from my sugar addiction, and I am an emotional eater and I can’t turn to the foods I love during this stressful time.

Yesterday, I was a total grouch. My kids were driving me crazy. Seth didn’t like anything I busted my butt to prepare for him. I burned my hand in the kitchen. We were going to a party, and I made sure to bring stuff my family could eat, but the whole thing filled Riley with so much anxiety. Anxiety about feeling “deprived” of what everyone else was having. Anxiety about being different. I was getting sick of hearing about it. On the way there we talked about all the kids she knows and I rattled off all of their food issues (there are plenty) and talked about how it isn’t a big deal and everyone had something they’re dealing with, and it was in one ear and out the other, her anxiety ramping up up up. I wasn’t the most patient. I  wasn’t talking it through, or validating her feelings, I was basically rolling my eyes, telling her “no one cares” if you are different, and “if you keep this up, we’re turning around and going home.”

She navigated the party quite well, with a lot of navigating on my part at the beginning, better after she got food, and with some whining at the end as we were leaving… over a box of canolis that showed up. She’s never had a cannoli, and she certainly felt like she was missing out. I convinced her that cannolis are filled with an almost cottage cheese filling and not even all that yummy. Todd mentioned how disgusting the pastry part is, practically made of lard. And for us, it is true, we’ve never really been cannoli people (Cheesecake? Now you’re talking). She felt a little better. Hey…you do what you gotta do.

We took a moonlit walk last night, after I heard the moon would be the  brightest we’d ever see in our lifetime. It was awesome, sitting there on a park bench, looking up at that beautiful moon with my husband and my sweet little kiddos.

After that, Riley was tired and very whiny getting ready for bed. Suddenly so tired she couldn’t wash her face. She started freaking about the garbage in the bathroom being full. She was teetering. Todd, who had worked at 6AM and then energizer bunnied all day, going to the store after work and then going to the party, well….he yelled at her.

It wasn’t a good loving supportive day for Riley. She is doing so well most of the time, we sometimes forget she still has autism. We forget it’s not as simple as saying, “Don’t worry about it.” If she could “not worry about it,” she certainly would. We never could have just blown off her feelings even a couple of years ago. We’d have had a major meltdown on our hands. Sometimes we forget how hard she is still working.

This morning, I snuck into her room and snuggled into her bed, wrapping my body around hers. She wiggled into me. I held her a while and then said, “Riley, I’m sorry I was so grumpy yesterday.”

Immediately she turned to me with her big beautiful eyes and said,

“I totally forgive you.”

Specific Carb Diet….Again

So, we tried IVIG for six months, and while it is doing a bit of good in between infusions, by about the third week Seth’s tics start happening again. His strep titers are still quite high. It is more of a band-aid and not getting to the bottom of Seth’s PANDAS problem.

When we first moved to Cleveland, we were on the Specific Carb Diet, (and had been on it for about 18 months, and wheat free before that) to help Riley with her digestive issues and hopefully her anxiety. It didn’t do much for her anxiety, but we were all so much healthier than we are right now. At the risk of TMI, I have two children who regularly clog the toilet with the size of their “deposits.” It isn’t normal to look at a little 55 pound kid, and think of him shitting a brick. And yet, he does. We plunge. We plunge much.

Riley’s intestines have always been off. Constipation is only kept in check with high doses of daily Magnesium. One missed dose and we have trouble.

We moved to Cleveland five years ago because the school system in Virginia SUCKED as far as autism understanding. Moving was stressful. The school we moved for didn’t work out and we pulled Riley out of it after two weeks when I picked her up to find every blood vessel in her eyes broken from crying so long and hard. We quickly found another school that seemed great, rushed to buy a house to live in the district, and the teacher Riley would have had, blew an abdominal aneurysm first week. During all this, an M.D. we began working with here convinced me that we didn’t really need the diet, she’d done some work with us to eliminate allergies, and those foods weren’t “allergies” for us, yada yada. I knew better, but I just wanted to be normal for a minute. I wanted to NOT have to make every morsel my family ate from scratch. Life was so stressful! We weren’t seeing many behavioral gains in Riley, which was really the big thing we were looking for. I didn’t have a freaking dishwasher. Or AC. And the oven has to be on all the time if you are eating this way. It was all too much. My arm did not need any twisting to toss it all out the window.

We kept up with eating healthier than probably 95% of America, but wheat and sugar quickly became addictions for all of us. I went into early menopause at 38 and quickly put on 15 pounds. Todd probably gained twenty. And Seth. Seth’s health issues began to show themselves in earnest.

So, we’re going back to this way of eating. I’ve been busy, clearing out my kitchen, starting over, researching recipes, cooking, cooking, cooking. Buying more chicken (and even some meat) than this former vegetarian can wrap her brain around. I’m making yogurt. Grinding nuts into flour.

I know it will become easier when I get into a groove. The hardest part is always social. So much revolves around food. Some people don’t understand. I don’t miss the raised eyebrows. The “is it a true allergy?” questions. The “can’t he have just one?” It’s hard enough to do the work of the diet, but to have to deal with other peoples’ skepticism….it just really blows.

Luckily I know other mothers here whose kids have food issues as well. It makes the kids feel less freaky.

Todd’s been hinting for a couple of years that he would like to go back to eating this way because he felt great on the SCD. He didn’t push though because he knows 90% of the work falls on me. Having spousal support for something like this is key. Knowing he’ll worship me keeps me focused. LOL.

We’ve talked with other families that have had success eliminating tics by changing diet. We want to leave no stone unturned. If this helps Seth, it will be worth it. If you want to know more about the diet or how a leaky gut can cause neuro symptoms and other health issues, there is a lot of free info on line. Start here for links and recipes. Or look at the GAPS diet, which is similar.

I’ll try not to be too self-righteous about it.

Pinky swear.

We’re going in.