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Things are still looking good here in our new GFCF world. Contemplating going Soy free too. Working on keeping a super detailed food diary to see if I see a relationship.
Taking on this diet is just dipping a toe into the biomedical world. A world that is very scary. Not because I don’t believe that there is truth in what it suggests, but because the Internet is just a big scary place for acquiring misinformation. And it feels like a slippery slope. First the diet, then the supplements, then the probiotics, then enzymes. There’s testing of everything under the sun and recommendations galore. How does one navigate it all?
Want to know how I’m navigating it?
By not.
I’m keeping it simple. We’re doing the diet and I’ve added a probiotic. From what I’m reading, we all can benefit from probiotics. She’s still taking her multivitamin and I’ve added calcium since I took away her milk and cheese.
I read about yeast and heavy metal levels and weak immune systems. Sometimes I slip into a bit of panic and think how I need to find out if Chee has yeast, or if she is loaded up on heavy metals. But then I force myself to settle down. I don’t need to run out and get a DAN! doctor and find out if she’s toxic on this or depleted on that. It’s just too much.
Perhaps I would feel differently were she chronically ill or had severe language impairments.
But she doesn’t.
Then again she has responded to the GFCF diet. So does that mean she has issues lying under the surface that I don’t know about?
See what I mean? Slippery slope. Panic.
Where’s the sand?
Alas I cannot bury my head. If I did, I might miss out on some seriously fun and amazing stuff.
Such as Chef Noodles.
Chee has been coveting this toy for some time. We walk past it at the grocery store and she loves to hold it and talk to it.
Her dreams came true this weekend.
It’s fun to watch her make Chef Noodles talk, to talk back at him. When myself or Daddy is puppeteer, she is very responsive to her culinary friend.
Although the diet is a pain, it feels worth it.
We’ll keep at it.
Bon appetit.
I am a skeptic by nature and tend to be generally dismissive, especially of things that are, to my mind’s eye, on the receiving end of too much hype. My default position tends to run that if something sounds too good to be true, then it probably is.
So when I heard about the Gluten Free Casein Free diet last year (thanks to the media blitz surrounding Jenny McCarthy’s book), I was skeptical. Can a diet really make that big of a difference? After researching what the Internet had to say, I deemed Chee not a good candidate for the diet for two reasons. 1) She doesn’t have gut issues; and 2) She doesn’t have Autism.
Reason number two is irrelevant now. I have learned that while Chee does not have a formal diagnosis of Autism, she certainly has many characteristics of it. Therapies and tools that work for children who do have Autism are often successful with Chee (e.g. social stories and visual schedules).
Reason number one still stands as well. Chee does not have any gut issues. She was not chronically sick as an infant. She’s been on antibiotics three times in her 4 years. She breastfed for a full 22 months which helped her to build up a fine immunity system. In short, she’s a healthy girl.
A few weeks ago I met some fellow moms of special needs kids at a group dinner and eventually the topic turned to biomedical interventions. I found myself listening intently to discussion of the GFCF diet. I came home and began reading about it online again. As I was reading through an assortment of “success stories,” I noticed a common thread. Many parents reported that upon starting into the diet, their child’s echolalic speech decreased or disappeared.
Chee’s echolalia and scripting has always been the dominant part of her language; and it has been rampant lately. While she continues to show more and more spontaneous language, it’s still just a small percentage of her speaking. The vast majority of her talking is scripted (often with appropriate substitutions) from TV shows, retelling stories we’ve told her, or just repeating some question over and over again.
Based on that one thing, a potential decrease in echolalia and scripting, I decided to try Chee on the diet. Dietary intervention falls in the camp of no harm in trying. I already am predisposed to believe in the importance of the food we eat, so I feel it’s time to put that into action for Chee.
It’s been about two weeks (we had some challenges during the power outage) since we implemented the diet (CF immediately and a bit slower transition to fully GF).
Friends, I’d be lying if I didn’t say we are in a state of shock at the changes we have seen in Chee. It is nothing short of impressive. Remarkable? Yep, a little bit.
The first change, about a week after she was CF and significantly reduced gluten, her echolalia all but disappeared. There are still bouts of it here and there, but for the most part, she’s not scripting or being repetitive anymore. That in and of itself is worth its weight in brown rice flour.
This has carried over into her pretend play. She was playing with a couple of her stuffed animals a few days ago. Her pretend play with those two teddy bears was all original, all her own. Usually it’s just her reenacting something she has seen on TV or something that we have previously played with her.
Another very early change is she has started using more Nonverbal Communication. She is now nodding her head yes and shaking her head no. I have never seen her use nodding and shaking her head to communicate with us. Now it’s all the time. All. The. Time.
Next, she’s more communicative of her feelings. She has twice told us she’s afraid of something. First, it was when I was asking her to come downstairs and say hi to the grandparents who had arrived to babysit. She said, I’m a little bit afraid to say hi to everybody.
Whoa.
Did she just say she was afraid of something?
She did it again on Sunday at the playground and then yesterday she surprised the heck out of me.
She was standing by the front door, refusing to walk to the van, instead wanting me to come get her. I finish buckling Ess in and walk back toward her. She says, I’m still a little bit afraid of the garage.
Again, whoa. Chee has been trying to identify and communicate her feelings lately. It’s been a struggle with limited success. Usually her language around feelings is very circular. I cried because I’m upset. I’m upset because I cried.
There’s more, but I will just hit the highlights.
Her eye contact (which I always thought was pretty good) is improved.
Her OT on Monday reported noticing better communication from her and more typical sensory responses.
Conversations are longer. And deeper. She’s more inquisitive (Mommy, what did you do today while I was goned?). She’s reading expressions on faces in her books. We were reading this book and she points at Farmer Brown’s face and says, Farmer Brown is sad.
I titled this post Skeptically Optimistic because I just have a hard time accepting all this as a result of the diet. She had just-barely emerging skills in all these areas. Yet, for there to be this much progress in less than two weeks … could it be the diet?
We’re not out of the woods yet. It’s too soon, I think, to say We have a responder! Or maybe I’m just afraid to say it for fear of being disappointed. For fear of realizing this is in my imagination.
We experienced a few unpleasant days of what may likely be withdrawal symptoms.
Yesterday she was very repetitive with me when she came home from school. She told me she had toast for her snack, which left me wondering – could the consumption of toast affect her language? It doesn’t seem to me that the gluten has been out of her system long enough for her to be negatively affected by even a minor infraction. But maybe??
I later found out she did not eat toast, so that wasn’t it. She’s also sick with a cold and fever – could that have played a part?
And therein lies the biggest struggle with this for me. How to interpret if something is or isn’t diet related. What does this mean? What does that mean? Is the diet still working? Did it ever work? How long before we know for sure? Will we ever know?
As you can see, I am full of questions.
I do know one thing: my husband and I are watching our daughter in somewhat of a state of disbelief.
We are most definitely in new territory. There is something going on here.
Yesterday my husband and I celebrated our seventh wedding anniversary (actual anniversary is Monday).
We lined up Grandma and Grandpa and Granny (my grandmother who is visiting right now) to babysit for the afternoon and early evening. Fortunately, all went well there. I forewarned my Mom that Chee was telling me that she did not want me and Daddy to go shopping without her, and suggested she bring something special over. She came armed with new sticker books, and Chee stopped crying about 10 seconds after we walked out the door.
Ess simply waved us off with hardly a Bye, Mommy.
Sticker books wield special powers apparently.
Our first date (a BLIND date even) was a Sushi dinner. Since then we’ve made Sushi our Anniversary “thing.” I will shamefully confess that the last time my husband and I spent time away from the kids together was exactly one year ago – our 6th anniversary Sushi dinner. We need to do better this year. It’s important.
Over the Sushi dinner, which was consumed at a mega International grocery store where we were searching for gluten free snacks (do we know how to celebrate or what?), we discussed the state of our union. OUR union.
Things are good. We ended up discussing more of our areas of frustration than of what is working. We agreed that the single most frustrating spot in our relationship is -are you ready for this? – our house.
Not our kids. Not his work. Not my seldom occasional frequent irritable attitude. It’s our house. I joke about my lack of organization and about what a disaster I am. But, really, I hate it. I hate being this way.
I am constantly frustrated that I can’t keep the house picked up. Because my “work” is “the house” – I am never away from it. He can leave a project unfinished at work, for example, and not have to see it again till the next day. I leave a project unfinished (the dishes, the laundry, the toys) and it’s staring me in the face. All day or night long.
When I’m in that place of perpetual frustration I, apparently, take it out on those around me. Since I’m a Totally Awesome and Patient Mother, that means the dear husband takes all of that, not the kiddos.
So I’m annoyed because there is clutter everywhere, I snap at him because he left his shoes in the front hall again (never mind that 2 pair of mine are there too), he is annoyed because I snapped, I’m annoyed because he just invalidated my reason for snapping. It goes on. And on. And on some more.
You know how usually in marriage it seems that opposites attract? My dearest and I are opposites in many ways. But when it comes to home organization, creating a system, a place for everything and everything in its place, we are similar. We both suck at it.
Enter the Home Organizing Professional.
Many a reader is shaking her head right now in disbelief that I would actually pay someone else to help me organize.
But pay I will. I, we, the family, need this.
When we have times where we get everything picked up and the clutter is put away, I feel so peaceful. I can relax. I am able to put my whole self in whatever I’m doing because there isn’t a nagging to-do list, or signs of distraction, everywhere I look.
We met with our Org Pro today. She’s a long ago friend with whom I recently reconnected. When she told me she had a small business as a Professional Organizer, I gasped. Audibly.
Could this be why we reconnected?
I don’t know.
But I do know she’s reasonable, she’s smart, she has lots of experience, and I need help.
If paying someone to help me do something at which I have zero skill eliminates the Biggest Source of Frustration in my marriage – I’d say that’s money well spent.
If it doesn’t, then it’s back to the drawing board at Sushi Anniversary Dinner #8.
One of Chee’s favorite activities is shopping. She is particularly fond of grocery shopping, but she will not turn down a shopping trip of any kind. Her love of shopping isn’t your typical retail therapy that many of us like to indulge. She doesn’t care about the acquisition of things. I believe she simply enjoys the experience of going to the store and helping me shop.
She’s quite the helper, too. She will count out the apples and oranges I request. She will find the particular items on the shelf that I ask for. She always selects her own flavor of crackers. She reads the grocery list for me and lets me know what next we need to search for.
The highlight of a trip to the grocery store, however, is the deli counter. She so loves to order our preferred brand of white American cheese that I have taken to only buying a half pound at a time just to ensure her an opportunity to “place the order” next time we are the store.
Chee is very in tune with the fact that if we are out of something, we can simply buy another one at the store. When she asks for something specific for lunch that I don’t happen to have, she says, Will you just go buy it at the store for me then?
This, I’m certain, stems from her younger days when she would be distraught that we were out of something (e.g. her beloved Popsicles) and so I would make a big deal of writing it down on a grocery list to show her we could buy them next time we’re at the store. This was a very effective tool for helping her understand that sometimes we have to wait for things. It was always cute to see her clutching her grocery list and asking if it was time to go the store yet.
Lately I’ve seen her take pen to paper and attempt to write her own list. Anything that gets her practicing writing is fine by me.
There are times, however, she gets a bit carried away with this idea of just getting a new one at the store.
Case in point: Chee has been shaking our banister (that overlooks the front entryway in our house) for some time now. She saw Ess do this, observed our stern reaction to it, and decided it was something she should do, too. All the time. Anything that earns a Big Reaction from Mommy and Daddy must be repeated over and over again.
You can imagine how frustrating this is. No form of discipline seems to be effective. I’ve posted a sign and I’ve used the dreaded Time Out. Eventually it will click. I hope.
Meanwhile, I find myself yelling saying Chee, please stop shaking the banister! You might break it! And you might get hurt if it breaks.
The first time I told her the banister might break, she ceased shaking it.
Hey, it worked! Or so I thought till she said,
If you shake the banister it might break. That’s okay, Mommy, you can just go to the banister store and buy a new one.
If only it were that easy.
It feels good to be somewhat caught up on life again. Sunday had been planned as a chore day for me. I took the girls to a birthday party and planned to come home to laundry, vacuuming, and bill-paying. Instead I came home to no power. Electricity returned Tuesday night. I woke up Wednesday morning feeling surprisingly overwhelmed with all that needed to be done. I say surprisingly because, if I am nothing else, I am calm, cool and collected. I just don’t get rattled. Much.
Despite the feelings of overwhelm, I muddled through Wednesday and today and the house, and life, is back in order (as ordered as things get for me, that is).
Chee’s school was canceled the first three days this week so she just went today for this whole week (no preschool on Fridays). She cried again when I walked her into the classroom, but again she stopped immediately. I stood in the hallway and listened so I would know for sure.
The note in the communication journal said that she participated in the group activities today including a choral reading of Brown Bear. Good stuff.
I am very much looking forward to getting on a consistent routine next week. Two days of school one week, followed by one day the next week has messed with my equilibrium. I feel so scattered. And I’m feeling a strong, strong need to have some me time. Fortunately our anniversary is this weekend and Grandma is lined up for Saturday afternoon and evening to give us some time away.
Hopefully I’ll come back feeling energized and enthused … ready to start next week.
Meanwhile, I leave you with this video. We have a trapeze in our living room and some time ago Chee started wanting to hang upside down like a bat. Initially we had to lift her up there. Then she started stacking pillows up nearly to the bar so she could put herself up there. Now she doesn’t need the pillows (mostly they are there for the soft landing – we don’t want her to break anything if she falls). It’s pretty impressive to see how far she has come with motor planning and muscle strength. She can be found pretending to be a bat 4-5 times a day. It’s pretty cool. She’s pretty cool.
I wave to you from the Caribou Coffee a few blocks from my darkened home.
Here in Ohio we experienced our own version of a rainless Hurricane Ike and have been without power since Sunday afternoon. No ETA on when it will be back. Maybe when I get back home this morning… (I can dream, right?).
We are fortunate to have sustained no damage from falling trees to our home. We are fortunate to have lovely temperatures so our house is comfortable. I’m quite happy that we have a gas water heater and gas stove so we have hot water and we can cook what food has not yet spoiled. Despite a soon-to-be-urgent need for clean underwear, we are faring well.
I can’t complain when others face so much worse.
However, I can tell you that I never realized how serious my daughter’s need for cold is. I have written before that Chee likes all things cold. She seems to prefer cold weather. Earlier this year as spring was turning into summer we stepped outside, she had a shocked expression and exclaimed, But where’s the cold?!!
The girl likes things cold.
We have no Popsicles. We have very little ice. We have no frozen waffles (one of her faves) to munch on.
Yesterday, several times even, in her angst she would scream out, I WANT SOMETHING COLD TO EAT!!! and fall on the floor in a heap.
The girl likes her cold.
The girl needs her cold.
It has been noted.
Now give us back our power and I promise never to take away her Popsicles.
From reading here the last few days, you know that I had some worries about Chee’s return to preschool. Chee did too as evidenced by her delcarations that she didn’t want to go to school or that she wanted me to go with her.
I’d had a partly ominous feeling since Orientation last week where she cried the first 10 minutes we were there, insisting that I hold her and demanding to be taken home. I cruelly did not acquiesce and one of the lovely aides was able to involve her in creating a book. Eventually I couldn’t get her to leave. Hello roller coaster.
Wednesday morning she, somewhat apprehensively, went with Miss K (from the dropoff line). I felt it was a good start.
When she got home and I asked how school was, she responded with, I cried a really, really, really, really long time. Her communication notebook in her backpack affirmed that, yes, Chee cried for the first hour of school.
Lovely.
Thursday morning she was upset and very adamant about me walking her into school. (At least she was willing to GO to school … I consider that success!)
I walked her in and then left her crying for me not to leave.
Apparently she stopped crying immediately and went on to have a great morning. There’s that roller coaster again.
No school on Fridays so she’s getting a break today.
I’m suspecting that Thursday morning was a bit of a test to see if Mommy would stay with her. I think I passed, but she might argue that I failed.
Here’s hoping next week brings a little smoother ride.
Happily, I wish to share some amendments to my earlier post. It was not total insanity.
After more than (at least) a half dozen episodes of Chee bursting into tears (real tears!) about not wanting to go to school, she suddenly turned a corner.
Mommy, will you drop me off at school tomorrow and then say ‘bye’ and I’ll go inside and play with play-doh.
Okay, then. Big improvement.
Later,
Mommy, will you paint my toenails so I can show Miss H my pretty, pretty toes.
She put her backpack on over and over again and announced, I’m ready for school!
I asked her if she wanted me to walk her into her classroom and she said,
No, I’ll just go in and play with play-doh.
Hearing her talk like this makes me smile and I think,
Heaven help us there better be play-doh in that room tomorrow.
I generally don’t write in Real Time what’s going on in our household. Daytime rarely affords me the opportunity to craft something meaningful and/or interesting. Usually I’m just bouncing from one activity to the next, cleaning up one mess after the next, fixing one meal after the next.
Today is no different.
But I am taking time, today, because we have reached a new level of insanity in this house, and I figure … why the hell not?
No, seriously. It’s not that bad, just a littly cray-zee in the house.
The most significant of the craziness is, in my mind, represented by the following things I’m hearing repeatedly from Chee.
Mommy, can you go to school with me tomorrow?
Mommy, I want to stay hooooommme.
Mommy, want to go with me to school tomorrow, please?
But, Mommy, I don’t want to go to school by myself.
Eventually when it sinks in that I will drop her off and she will go in to see her friends, I hear this:
Mommy, can you drop me off tomorrow and say ‘bye’ to me and then I’ll go in to school and I’ll just cry.
Sigh
I tell her about the different friends she’ll see, how school is not for the Mommies and Daddies, just for kids. She’s okay with all of it, she’ll just go in and cry.
I remind her about the neat things she’ll get to do, like have a snack with her friends.
I want to eat my snack at home!
My plan has been to drop her off and go on my merry way with Ess. Instead, I think my husband will go in late to work and stay home with Ess while I take Chee. Then I can go in if she is really desperate for me.
This is hard. I know many have walked this path before me, though, and we’ll get through it.
My gut tells me that it’s just the initial anxiety about going, but once there she’ll be fine.
I hope my gut is speaking the truth.
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