Things at the end of the year

Well, let's see. Where are we now?

Rachel and Sarah got bikes for Christmas. It'll be interesting to see how that will affect their gross motor skills. It'll also be interesting to see the rules we'll need to put in place surrounding the bikes and going out on them. For now, the girls are only going to ride them when we can supervise, mostly because they have no idea how to ride a bike (or where). Also, though they've gotten much better at communicating, they still have trouble with sensory input and being constantly aware of their surroundings.

Rachel and Sarah have, for the past couple of months, been going to Activity Days. And doing a great job. :) The report back is that the other girls love them and things are going very well. I can see the possibility of a challenge in the future regarding boundaries, but I'm very proud of them so far in their social abilities. Very happy. :D

As for Stevie, we took him to a chiropractor friend of ours around Thanksgiving. He gave us several things to think about and avenues to explore. He also pointed out that Stevie seems to be suffering from lower back pain. That would make sense considering his hips seem to be doing fine and I haven't noticed anything weird in his legs. In the meantime, we've modified some of what we've been doing for him. Here's some things we've added.

Fresh Juice - our chiropractor friend talked to us about the digestive problems and brought up the option of enzymes. So, because we had to stop the breastmilk (had to for a separate reason that had nothing to do with Stevie) we have been giving him fresh carrot, apple and grape juice (separate, single juices... not all at once) as much as he wants with a focus for a week (carrot one week, apple the next, then grape, then we go back to carrot again). He really loves the apple and grape juice and will tolerate the carrot juice... we may end up mixing the carrot with apple so he gets enough. You'd think he'd drink huge quantities, but so far he hasn't downed more than three cups in a day, no matter how much he seems to love it.

Increased Sprouted and Living Food - Whenever he asks for fresh fruits or veggies, we give them to him. And we try to make sure most of his grains are sprouted and low-heated, then blended so they're easier for him to digest. Flour products, even whole grain, are a rare thing now.

Three Oil Massage - Yup, we're doing that full tilt again: castor oil applied before bedtime for two days, then olive oil for two days, then wheat germ oil for two days. We've found it really helps him if he takes a warm bath first. Also, we've found nothing takes out castor oil if it gets on clothes, so we lay down an old towel on his bed for those nights and put him in clothes that are specifically for those nights that we don't care about losing if they get stained. He LOVES the massage, especially when we get to his back and starts giggling now when he sees us get out the oil of the day. I give him the T.O.M. to feed his body through his skin as well as help him stay aware of his muscles. He's always more likely to bounce around and play after a massage (you'd think it would relax him but that hasn't been the case since the first week). I go along with this and we end up doing some of the games I used to play with Rachel to improve her muscle tone, as well as some that help with lower leg and abdominal strength.

"Cleansing" Tonics - I hesitate calling them this because they're really more nutritive than cleansing. They support the functions of different systems in the body. We're using these as a supplement to the slippery elm and Kid-e-Reg to increase his body's ability to break down the foods we give him. As of right now, he's taking Liver/Gallbladder Formula to help with bile production, Kidney Formula to support those organs while we work on that part of the digestion, and BloodStream Formula which is a general all-around tonic that we've found helps with digestion among other things.

Complete Tissue and Bone ointment on his spine - After the chiropractor pointed out that he seemed to have lower back pain, I used Cayenne Heat and CTB together on his lower back. After about a week of that, he complained when I used the CH so I took that out and just used CTB. Then, because I noticed he kept his whole spine straight and didn't like to look up at stuff, I used it on his whole spine from the top cervical to the tailbone. I apply it in the morning and when I do the Three Oil Massage.

The result? Well, we started the ointments around Thanksgiving and we're now on week three of the juices, extra formulas, oil massage, and ointment on his whole spine. Stevie now bounces along the floor instead of the straight, careful scoot he was doing before. He's started playing with sitting up and laying down, essentially doing sit ups... he avoided that before... it seemed to cause him pain. This also applies to side-sit-ups, which he's been doing more often as well, usually as a game with me. Also, he's been going crazy with hitting things with his toy hammer. He'll tap the floor with it as he scoots along. Which reminds me, he's starting to scoot without touching the floor. Often this is because he'll have two things in hand and doesn't want to let go of either of them.

We've also been noticing his sensory issues have been going down. He's not as sensitive to sensory input as he was before and I'm wondering if these "sensory issues" weren't the same as when I used to be in pain and wanted the rest of the world to drop off.

We aren't as concerned now with reflux. The only time I get concerned is when something gets him laughing really, really, REALLY hard.

Most importantly, he smiles most of the time now. And he hasn't been in the rocking chair for over a week... he's been choosing the floor so he can explore the house. :D

As for the doctor issue, one of our possibilities moved. And her replacement doesn't sound very promising. Oh, and another isn't accepting new patients right now; we're on her waiting list. So, we're still looking. I may try signing up on one of those mom bulletin boards like Mom Cafe and see if I can't find a local one that fits our family. This is becoming more difficult than I thought.

But hopefully we'll find one and I'll be able to get the girls involved in Spirit Horse next year. That's one of my goals for the year.

"They taste like stained glass pictures"

No, I didn't feed her glass. The title was Sarah's comment after eating some sprouted blueberry muffins I made this morning. :)

Sorry it's been so long. Nothing bad has happened. Nothing ecstatically good either. Just life. School has been taking up a lot of my time (it's going well btw) and I've just been focusing more on my home and family in general. With one exception, which I will talk about on a different blog. Maybe. If I have time. It's nothing big. Just that I've finally decided to try going into freelance writing again. I'm really not sure how I'm going to do it. It's something I'm still working out.

I'm also wondering if I should start yet another blog and "retire" one of my other ones. I had a blog about homemaking, but I realized the other day that the kind of homemaking I do, and the current project we have going on food-wise, doesn't really fit that blog. It's more of a natural healing kind of food thing. And I think it might keep me motivated if I blog about our transition. Anyway, enough of that.

Updates.

Rachel seems to be doing okay with Deborah joining her for math. She's still not quite ready for reading yet, but soon. She's kind of hit a plateau, though I'm very happy with where we are right now. Yesterday, my youngest, who's ten months old, started fussing while I was exercising. I couldn't stop right then, but as I wound things down so I could take care of him, Rachel, who was very concerned about him crying, came over and started playing with him. To be as expressive as she was and as genuinely emotional as she was is amazing for someone in the spectrum. There was a time when all she would have done was commented on it, or maybe robotically go over and try playing with him without showing much, if any, concern.

Sarah has been doing really well with flexibility. I'd like to say this is due to some behavioral trick I've been doing, but I'm fully convinced now that it's diet. She hasn't had any white flour, or even whole wheat flour, in about two weeks. Everything, with only a couple of exceptions, has been sprouted and either used whole, blended, or dehydrated and then ground to make sprouted flour. As we dedicated ourselves to this, her behavior really improved.

That's another reason I'm thinking of doing this blog about our transition to a more raw-based diet (in our case, Dr. Christopher's mucusless diet). We see really good results when we stick with it, and we have enough information now that I think we could make the transition fun.

Oh, and the reason we've been focusing on sprouted grain flours and sprouted grains in general is because it increases nutritional content and reduces various inhibitors, not to mention reducing gluten. In fact, the main reason... well, that will take another paragraph.

New paragraph. The main reason we're doing this, unfortunately, has little to do with our two eldest. Becky, our third-born, has always had a sensitive stomach. We tried several factors but none of them seemed to fit what she was describing. sof for a long time we weren't sure if it was something in her diet or if the stress in her life manifests itself in her gut (like Mr. Vinca). We hesitated pinpointing wheat (the most likely culprit) because it has been a wonderful grain for our family and makes up the bulk of our food storage program because of its versatility. However, last month, we were able to use our grinder for all our flour needs.

That did it. Becky had a pretty bad reaction, though nothing that some herbs couldn't take care of (catnip and fennel in case anyone's curious).

So, a week ago, I decided to try an experiment. I lightly sprouted some wheat to make sprouted wheat flour leaving the extra as it was, and made bread out of the whole thing. Bread has been Becky's most loved food and the one that consistently left her in pain.

She had about half a loaf. No problems.

We've been sprouting all our grain ever since and she's been doing really well with it. She hasn't complained about an upset stomach for the past week or two. So, Sarah's improved behavior, Becky's improved digestion, not to mention Stevie's as well (he absolutely thrives on the sprouted grains), has convinced us that this is something we need to stick with in our family.

In fact, the only problem I can think of is that Becky is a real people-person: she hates knowing that her friends are eating something she can't eat. I figure pointing out her digestive upset afterward will probably be enough, but she's getting to the point where I can't monitor all the food that she eats. Now that we know the problem, she's going to have to make the decision herself if she wants the full benefits from it.

Just in case I don't get to creating that blog, here are the recipe books we've been using in our transition.

• Traci's Transformational Kitchen Recipe Collection by Traci Sellers. This is our top pick since it gives me a lot of inspiration and lots of comfort food recipes, including desserts. Plus, it's written with the idea of "transition" in mind, so it gives alternate directions at times for those who want a more traditional approach without abandoning the recipe (this is mostly true for the beans though she does this with some of the flour recipes as well).
• Introduction to Baking with Whole Grains by Sue Gregg. This is also a top pick since it discusses principles, using the recipes more as examples than a step-by-step-this-is-how-you-do-it-every-time recipe book. It covers everything from soaking grains in an acid base to sourdough to sprouted flours.
• Recipes for Longer Life by Ann Wigmore. This one is a difficult recipe book. The trouble with many of the recipes is that whoever wrote it assumed a level of knowledge about not just cooking but cooking with raw and fermented foods that I didn't have when I first picked it up. If you use this book, assume a steep learning curve since not all the information is given up front (especially the recipe for coconut oil... you'll need a heck of a lot more rejuvelac than the initial recipe makes). With a few exceptions, I never got a recipe right the first time with this book. In fact, I nearly got turned off of saurkraut because of this book. You may wonder why I'm adding it to this list. The reason? Once you "get" the recipes, they're wonderful. Her approach to raw foods, though not perfect, is truly excellent and I've found some real gems in this book. Plus, she has an excellent plan at the beginning for moving away from the traditional American diet to a more living-raw-kind of thing.
  

Now, I'm not saying meat is bad or whole wheat flour is bad. But everyone has their levels of tolerance and I'm thinking we've found ours. More some other time.

Wow, has it been that long?

Life really pulled me away from the Internet.

Summary of what's been going on since my last post.

First, Sarah has been doing phenomenal. Her behavior has been improving and her flexibility has really started to increase (thank goodness). She's more willing to let go of things than she was in the past. She still has moments, but she's doing much better than she was before.

Rachel's sensitivity has decreased to the point where I can wash her hair without her screaming in pain now. And I can brush her hair though it still causes her some distress. Nothing like before, though. All this happened after our last cycle of the Heavy Mineral Bugleweed formula. She's at a point now where we're going to stop that part of her treatment for now and focus on speech therapy and teaching social skills (that's where Sarah mostly is though her's are at a higher development).

Finished the evals except for the recording I usually take. I couldn't find the voice recorder and I decided it was better to work with what I've got so far and just take a recording next quarter. Still it's good to know where the girls are. Rachel is now at a 3-4 year old level developmental age-wise and Sarah is around 6, in some ways 7, in her development skills, with the exception of occasional inflexibility. This means Rachel is almost ready to read and Sarah will probably be ready for baptism in the next few years.

I'm not sure how to prepare the girls for their sister's baptism. In our religion, that happens at 8 and their younger sister is coming up to that age faster than I realized. I know they'll want to be baptized, too... I just don't know how to explain why they haven't been baptized yet (i.e. why they don't need it now).

Finally, Stevie, our toddler. He's been doing better. We've changed his diet dramatically. All grains are sprouted or at least soaked, pasta has been severly curtailed as has most wheat and wheat products. The one exception is Ezekiel bread, which has been on sale for a while at our local health food store. It tastes so good I've been trying to figure out how to recreate it. Meat has become an extremely rare thing, and half the time we serve it I give Stevie a substitute. No dairy, with one exception: breastmilk (I pump a little extra and give him maybe a tablespoon or two in a cup... he's not a big milk drinker). We added the breastmilk after much thought and prayer. We feel that, considering his age, it's still the most assimilable form of food he can take right now. Also, since it's summer, I've tried making more and more "green" smoothies (like the Shrek shake which has spinach in it), so I think that's been helping, too. As for supplements, we've been using Kid-e-Mins, Kid-e-Calc, slippery elm gruel, and Complete Tissue Formula, internally and externally.

The results? All of this has been helpful, but the one that had the greatest effect was the breastmilk. He went from barely talking to, the next day (!), giving me a constant stream of "That, that," satisfied only when I told him what the item was. It's been that way ever since... has not stopped at all. :) He's also used phrases here and there (the best was when he pushed himself up from a lying down stomach-down position to sitting up... he said, "I did it!" and smiled like he was really proud of himself). Most, I don't completely understand, but one or two I do (see previous sentence). His overall energy improved dramatically and his digestion seems to have improved as well. He doesn't seem quite as distressed when I pick him up and I don't hear any reflux going on anymore.

The other stuff helps, especially the slippery elm gruel and Kid-e-Mins, but nothing seems to have helped like breastmilk.

As for motor skills, he doesn't ask me to pick him up as much. And he never asks for help down from a chair or his bed anymore. He'll climb down himself and usually will stand for a little bit before sitting on the floor. He's been scooting around more and I've been noticing he's been using his legs more often for things. For example, the other day he kicked one of his toys around for a few minutes. He's also been stretching his legs out more, including kicking himself on the head (gently), lol.

But the nicest thing is waking up in the morning, hearing him playing with his brother instead of waking up crying (and occasionally screaming). We've still got a ways to go, but I'm more hopeful than I've been in a while.

Last item I'll talk about today, I've found a list of possible doctors from a friend of mine. I'd still like to get Spirit Horse going for the girls and I'd kind of like a baseline for Stevie, so I'm going to try to set up interviews this week with some of them. I've found that tends to be a good indicator: if a doctor is willing to have a free interview with a parent, chances are they'll be pretty good. It shows whether or not they're willing to take the time for you and your kids, especially to answer questions. The last time I looked for a doctor, all but one refused the free interview. The only one who did turned out to be really good with kids and very knowledgeable. He had to retire not long after, but while we had him he was fantastic.

Looking foward to what lies ahead. And hopefully I'll be able to get back to blogging again on a more frequent basis.

Interesting article on screening

We're beyond this phase now, and I can see many arguments for screening. However, it's good to see the possible dangers as well.

Article: Why Children Are Not For Screening

Portfolios

This week my goal is to finish the speech therapy evaluations, put together a list of supplies, and figure out which curricula I'll be using this year. I only have a couple of textbooks that are "must have". The rest I either already have or can get through the library.

One thing I'm looking into is finding a way of organizing the kids records so that I can show they do indeed work on schoolwork without taking up a lot of space in the house. One book I've read talks about using portfolios of the kids' work. The idea is to only keep the stuff that highlights the year, kind of like an artist or writer's portfolio. I'm not sure how involved Rachel would be in the process (probably very with the way she's been lately)... I know Sarah would love the idea. :) Not to mention my other children.

And, of course, the reason I'm looking deeper into organization is because I will have four children in homeschool this year. One is starting to transition into doing this herself but she won't really be at that point for another couple of years. The other three need quite a bit of supervision and I need a system that practically runs itself. I understand portfolios (I was building one for myself for a while there) so I'm hoping this works out.

The most difficult part of schooling right now is space. All records and textbooks are kept in my room due to a certain little child's love of ripping paper, especially books. Until we train him otherwise, I've kept the really important stuff in my room. However, this means I don't have the luxury of a stand-alone workspace. Instead, I've dedicated some of the shelves in our room to homeschool storage. Once I get it organized, I may post some pics.

So, IEP's and evals today and curriculum stuff the rest of the week. Wish me luck!

About Stevie

I wrote this as a reply to a friend's blog post regarding their little girl. Blogger told me I had exceeded the comment limit. :) So, I'm posting it here, changing the name of the child to protect privacy.

I don't consider Stevie as "special needs" (and hopefully won't) but this kind of regression isn't good, especially now that I've realized the source.

From comment:

Wow. We're going through something similar with Stevie, though we're starting to get worried. (Warning... long comment ahead.)

Before I say anything more (and end up frightening you), I personally knew a child who didn't start walking or even standing until 18 mos. She did both in quick succession and never had a problem with walking from that point on. Her mother worried a little but not much once she realized her daughter was still within normal developmental limits and didn't show signs of any other delay.

Now, our current situation with Stevie.

He didn't really ever crawl. He also learned to scoot on his bottom and used that as his primary means of getting around. About the one year mark for him, it looked like he was having some trouble but he could stand and even walk around holding onto something. My favorite memories of that time are watching him walk along holding onto the handlebars of a four-wheeled "bike" we have. And he would climb on the couch and crawl on occasion, though he didn't really like it, and would walk a few steps if someone held his hands. He also cried a lot and was more sensitive than any of our other kids (excepting Rachel and Sarah).

Sometime around 18 months, he still wasn't walking by himself. He also wasn't climbing up on the couch as much. He didn't even try riding the "bike" anymore. I tried getting him to walk by holding my hands and he would refuse, demanding I pick him up and carry him around (talking isn't a problem for him).

This kind of worried me, but Rachel was also delayed in walking and she didn't stand up on her own until she was about 18 months, didn't start walking on her own until about 2, and boys take longer so I thought maybe Stevie was just taking his own time on this.

A month ago I realized Stevie wasn't standing up anymore. He wasn't even using props and when I watched him try once, it was clear he'd lost muscle tone in his legs and hips.

I've also discovered that he's been having trouble with digestion. He's always been prone to infections of all sorts (I was pregnant with him during the foreclosure... a time when I had my hands full making sure everything Rob and I had worked for didn't fall apart... didn't take care of even the basics that I usually remember during my other recent pregnancies). Lately, he's been having trouble with reflux, bad enough that up until about a month ago (when we started treating it), it would wake him up at night. I'm guessing that his trouble with digestion and his lack of muscle tone are related, because I'm learning it's not just his legs that are effected. The only reason I haven't noticed his loss of muscle tone in his arms and trunk is because he really loves examining things and has forced himself to keep using his arms and remain sitting so that he can keep exploring. If his body is having trouble assimilating his food, then it would make sense that he would start to regress.

Stevie also still has a tendency to be very sensitive about... anything. :) He cries a lot as well and demands to be picked up instead of getting places on his own. I now see that he didn't want to use his muscles because he didn't feel the strength to use them was there. In my research, I found that crawling on all fours is how babies exercise their leg muscles. So, scooting on his bottom is a way for Stevie to get around using less muscle.

I don't want to scare you. I'm just surprised at the similarities and will be watching to see Aurora's progress. Also, I will start posting about Stevie on There and Back Again. We've started doing some stuff at home based on what we learned with Rachel and what we've learned about digestion, minus the speech therapy since he really doesn't need it.

Like I said, I don't want to scare you. If you feel there's nothing wrong, go with it. My experience with Rachel, Sarah, and now Stevie has shown me that mother's intuition is more correct than I thought.

Now, for the post proper. In the past month, we've starting using slippery elm and marshmallow root gruel (it tastes a lot better than it sounds... all the kids love it except for Rachel but it's expensive enough that we strictly treat it as medicine and give it only when necessary). The slippery elm/marshmallow root gruel has taken away the near constant diaper rashes Stevie used to get. It has also taken away his night reflux and seems to be helping more with digestion in general. However, he still has a delicate stomach. Too much laughter will give him the hiccups and whenever he gets the hiccups he gets very distressed, like he's about to throw up. So, unfortunately for his brother, no rough play... for now.

As for tinctures, we've been giving him a number of Dr. Christopher products. We've been using the Complete Tissue Formula in conjunction with Kid-e-Calc (apple cider vinegar based so that also helps with digestion) and, most importantly, Kid-e-Mins. Kid-e-Mins is like a child's version of VitalHerbs, a nutritional supplement very similar to the Superfood Rob and I take. It's a faster way of getting him the nutrients he needs than juicing (though I do that whenever I can as well... carrot juice mostly... especially since we've had a little trouble recently acquiring the Kid-e-Mins) and therefore makes his supplementation a lot more reliable.

As for exercise, I've been refusing to pick him up and carry him where he wants to go. If he wants to sit with me on the couch, I encourage him to climb up and sit next to me. Also, if he wants to be picked up, I tell him he has to stand first. Also, time in the high chair and any other sitting device has been severely restricted. He is never in a swing, only stays in his high chair long enough to eat and I have also been avoiding car seats and strollers whenever possible. If it were possible (and it just might be at some future point) I would replace the stroller with a sling as the sling encourages muscle movement, especially regarding balance.

The result in a month? He's tried crawling for the first time in about 3-4 months. His balance has improved to the point where I don't need to firmly hold his chest when he stands, though he still holds my arms for balance. He even takes a few steps. :)

I'm reading a book called Pediatric Physical Therapy by Jan S. Tecklin to see if I can find anything else that will help.

I'll post again in a couple of weeks about his progress and any changes/additions I make to his program. So far it's very encouraging watching things come back "online". :)

Update: I've noticed Stevie gets weaker when I use whole wheat flour. It's probably because it's so difficult to digest. So, we're using sprouted wheat with him this week. We'll see how that does him. We may end up having to do a sprouted grain diet like we did with Rachel and Sarah. Not too thrilled about that from a convenience aspect but it'll make it easier for all of us to focus more on a whole grain diet.

Epsom salts and autism

So, while I was at my local health food store, they had a book there called Enzymes for Autism and Other Neurological Disorders. They had a section on epsom salts as part of the detoxification process.

Being cheap, I decided to do the research online. Personally, I'm sold on epsom salt baths for my two eldest. I've been using them on Rachel and they've calmed her down immensely. We use them every other day for two weeks and take the third week off. However, I starting using them as part of the Heavy Mineral Bugleweed formula's instructions, leaving the research for later. This line of products is that good.

Okay, back to actual info. The point is that I found this article (which uses a font suspiciously close to that of the book I saw in the health food store.... hmmmm) that explains a little more about the things I've already been seeing in Rachel as we've used the baths. The same article also has some fantastic information about applying epsom salts as a poultice or an oil. This is still just the beginning of my research, so please use the article as a jumping off point only. Thought I'd share it... that's all. Will post more as I find it.

Also, thought I'd note that Rosemary Waring, the one quoted, conducted a study for the Epsom Salt Council. This is one of those rare cases when the source doesn't really matter to me, but I thought I'd mention it since it may matter to some who read.

Back again

So, I've been gone a while, eh? Too much to put into one post. Focusing a lot on home and family right now, just general maintenance.

Ordered Pediatric Physical Therapy through Interlibrary Loan. It's mostly for one of my other children, but I'm sure I'll find some good stuff for Rachel in there. Will review at some future point.

Started Rachel on Heavy Mineral Bugleweed formula from Dr. Christopher's line. She's been taking it for a few weeks now and already we're noticing a difference in her communication and sensitivity... lots more smiles. More on that later. Still doing flax oil. Still helping.

Note: we had made a lot of dietary changes prior to starting the HMB formula. I think that provided a necessary foundation.

No more time to write right now. Will write more tomorrow on progress as I try to get back on a regular schedule.

New Trouble for Special Needs Kids at School

This amazes me. I'm hoping this is isolated and won't spread through the rest of the nation. Personally, I would rather see parents homeschooling their special needs but only as their choice. They shouldn't be forced into it by the public school system.

Parents of Special Needs Students Clash on Truancy

Addendum: I wonder if they'll fit them with ankle monitors.

Five-Word Sentence

They were asking for more mashed potatoes. I gave some to Sarah and some to Rachel. Rachel asked for the salt. After she was finished salting her spuds comma she said to Sarah, "Here, Sarah. Here's the salt for you."

I was so excited that I leaned down and started hugging her and said, "You speak so well! That was so awesome!" She smiled and giggled.

***END TRANSMISSION

(cavamil's note: This is awesome! The best part of it, for me, is that she did this entirely spontaneously: a full paragraph, one five-word sentence and her intentions was to help her sister by anticipating her need. Too cool.

I would also like to point out Mr. Vinca's response: big and loud and sincere in its praise of what she should do. The flip-flop in action.

And I would also like to note that this is Mr. Metallic Vinca's first post here. What a way to start. :))

Four words... consistently

I don't have much time to post this week... or the next... or the next. I'll do what I can but this is my marathon month when it comes to celebrations. Many commemorations, many parties, much to do for little ol' me and I feel lucky I'm getting in school during this time period.

That said, I do want to post a small update. Rachel is now consistently using four word sentences and adding five word sentences. Her most recent five-word sentence was, "Mom, more rolls for me, please?"

Sarah is currently learning how to play Rhapsody in Blue by ear. It started with my husband trying to learn it and showing Sarah how to do some of the fingering. Now, Sarah can play the melody and is trying to figure out the harmonies.

I played Shadows with Sarah last week. Forgot to blog about it. It was fun as long as we kept it short. Leaving decisions to the dice turned out to be more stressful for Sarah than I anticipated.

Short games, only short games for now.

A threat to older children's books?

CPSIA effectively bans pre-1985 children's books from sale. I got the email from my homeschool group this morning (arti cle they sent). I'm not entirely sure what it all means, but the little research I've done says that this article is accurate -- at the very least regarding how used booksellers and libraries are responding.

It seems the problem is that before 1985 lead was used in the illustration ink of most children's books. (BTW, children's books here are defined as books for those 12 and under). Now, the government is very careful to say that these books are not banned. The government isn't telling anyone to throw out these books. They just have to get them (or a large enough sample) tested to make sure that the books don't have excessive amounts of lead.

The problem is that the government is asking for expensive tests. Most used booksellers don't make the kind of money that would allow for those expensive tests, so guess where the books go?

Summary of how things stand (to the best of my knowledge):

• "Vintage" or collectible books are safe. The government assumes only adults will be reading them.
• Library books are safe for a year so that the government can get the required testing from said libraries.
• Used booksellers either have to get the expensive tests done or chuck the books. It seems the most sane financial decision is to just chuck the books.

This is according to my research. I don't know about you, but I'm going to double-check some stuff and write to my local paper about this. The implications of this law are far more evil than I first thought when the focus was on used children's clothes.

our door and an update

Well, I finally did it. I finally got the alarm set up on one of our doors. I've explained to the kids in great detail the horrible consequences of opening the door without permission, as well as why you shouldn't go outside -- once again, without permission.

My goal with this is to eventually get our house to the point where I don't worry about having any difficulty getting outside quickly in an emergency. And where I don't worry about our two eldest wandering outside and all the dangers that might follow. I have to admit I feel much better doing this now that Sarah has memorized her full name, our address and appropriate phone numbers. She's also much better at communicating than she was even half a year ago. Rachel is almost there. She's gotten her name down and almost has our address memorized. I think between the things we've taught them and this alarm thing we're setting up, we're finally getting to the point where boundaries can be abstract instead of only physical.

Today is a good day... a good start. :)

Also, as follow up to Don't React, I can say with certainty that not reacting really does lessen the fits when they happen. Sarah is much more likely to stay calm as long as I stay calm inside. Even when she got upset this week, it didn't translate into a tantrum or mental vapor lock.

Next focus, eye contact. Will blog about that next time.

Oh, and I'm seriously considering getting some vocabulary cards for Rachel. More on that in a later post.

Conversations 2

Yesterday, Granma and my brother came by to visit. All the adults were talking when suddenly I felt someone tapping my arm and turned to see it was Sarah. She said, with full eye contact, "Excuse me. It's my turn now." She then proceeded to talk to Granma and my brother. :)

***

This isn't really a conversation, but it touched my heart so I thought I'd share. Sarah got a copy of the Book of Mormon some time ago from a teacher. Becky keeps borrowing it, so when I was at the LDS bookstore yesterday, I bought her a copy and her sister Deb a copy (she'll be reading very soon). I didn't get one for Rachel because although she seems to want to learn how to read, she's not quite there yet in her pre-reading skills (getting closer each day though).

So, last night, we gave Becky and Deb theirs. Rachel, for the first time ever, looked deeply hurt. She's been upset before when she hasn't gotten a present while others get one. This time, though, she would look at me with a deeply hurt face and quietly walk away when I was around. For the first time, she absolutely refused to be comforted.

I found a copy of the Doctrine and Covenants and gave it to her. Her face lit up and she's been quietly happy ever since.

I guess I need to step up the work on pre-reading skills. :)

disabilities.lds.org

Our church has a new website devoted to helping all its members in dealing with disabilities. On the left-hand side is a list of disabilities; autism has its own category.

I really liked the overview they gave of the challenges/differences that characterize those with autism, especially the mention of sensory overload. Church has always been a struggle for us because of the noise and crowds. We're at the point now where I feel comfortable taking the girls to Sacrament Meeting (it's my young boys I'm worried about now :). However, it took us a number of years to get to that point, and much, much patience on our part and on the part of ward members to work out a good solution for Primary (where the kids go to learn about Jesus).

I especially loved this tip for teachers. They have several but this one is the one that has helped the most both at home and church.

Provide frequent interaction and activity. It is unrealistic to expect a person with autism to sit for long periods and listen attentively. Don’t expect too much too soon. Patience, consistency, and caring will eventually bring progress.

This is a great resource, just for the information on autism alone. I would love for every member of my church, whether or not they work with someone in the spectrum, to read the information on this site.

Quick update

I've been focusing on my reaction to what the kids do and I'm seeing a difference already, the biggest difference being in my interactions with Sarah. By staying calm and talking slowly, it seems to help her keep from going into vapor lock when something upsets her. It also seems to help her be more reasonable when the answer is no. More about this on Friday.

On a somewhat different note, the rule regarding TV has really been working. One of the most fascinating things I've noticed is that when we stopped letting the kids watch during the week, my husband and I stopped watching movies at night after the kids went to bed (when we had cable it was the Daily Show/Colbert hour). Instead, we clean up whatever needs to be cleaned up, "shut down" (i.e. make sure doors/windows are locked and lights are off), and go back to our room where we write, read, play with the littlest one if he's awake, or just talk. That lasts about an hour or two at most and then we're usually in bed. Movies now are a very rare thing for us as a couple. And we don't mind it.

I mention this because it was a side-effect I didn't expect and thought others should know about.

Have to post something so...

... I shall direct you, dear reader, to these pretty flowers. We're going to make them tomorrow as a belated Valentine's Day present for Granma. She's been fantastic helping us out recently and I'm very grateful for her sacrifices. I mean, really, her time raising a family is over and yet she's willing to use her day off to help me out while I get some issues taken care of.

I hope she likes the flowers.

This is also one of those times when I wish I had a digital camera (something better than what my old phone has) so that you could see my kids' creativity in progress, especially Rachel and Sarah, who really love these kinds of projects. I'll do what I can with words.

Don't react

So, we ordered another copy of What You Can Do Right Now to Help Your Child With Autism (hereafter referred to as WYC) by Jonathan Levy, since we loaned ours out and it hasn't come back yet.

In re-reading it, I was surprised at the information I remembered and the information I'd forgotten or put at a low priority. #1 on his list, for example, isn't eye contact. It's summed up in the title of the chapter: Don't React.

Let me see if I can explain this as well as he can and in a smaller space. When a kid does something, it often gets a reaction from us. If it's something positive, we may get very excited. We may not. But if it's something negative, we always have a big reaction (compared to our usual reactions). Sometimes these reactions can be funny in a "just got hit on the foot with a hammer" kind of way.

Why is this important? Kids in the spectrum have very little control over their lives, even less most of the time than "normal" kids for many reasons. There are several ways kids in the spectrum handle this lack of control. One way is to cling to structure. Another way is to change their environment. Getting a parent to react is definitely a change in the environment and gives the kid a measure of control, especially if the parent looks like a cartoon character in the process.

So, if you want to stop a behavior, don't react. It's a huge attitude adjustment, but it definitely works.

How do I know? I started doing that this Friday. I'll try to remember to blog about the results at the end of the week. BTW, it's not like I haven't been doing this. I'd just forgotten how important it is.

It is also important to remember the other half: make sure your reactions to positive behavior are strong and big (compared to your normal reactions). In other words, you're trying to flip your reactions from negative=big, positive=normal or nonexistent to negative=normal, positive=big. (This also works with "normal" kids, btw.)

Now, that doesn't mean that you ignore the behavior. You just deal with the consequences in a matter-of-fact way. Even the extreme of hitting and other violent behaviors are dealt with in a calm manner.

Like I said, I already knew this, but I'd forgotten just how vital it is when dealing with kids on the spectrum. The flip-flop in reactions is going to be my focus this week and I'll let you know how it turns out.

Conversations

The other day I was talking to Rachel. Or, rather, she came up to talk to me.

"What you gonna make?" she asked. It's her way of asking what the next meal is going to be and, though sporadic during the day, always shows up around bedtime. This happened to be near bedtime.

"I don't know. Probably oatmeal."

"No, Mom," she replied calmly. "No oatmeal."

"Hon--"

"I hate oatmeal. How about muffins?"

A little surprised since this is the first time she's offered an alternative, I say, "I don't have any wheat sprouted yet for muffins, so we can't have them tomorrow. But we will have them sometime this week, okay?"

"Muffins?" she asked, very happy and somewhat surprised as well.

"Sometime this week," I say. "But not for tomorrow's breakfast."

"Okay, mom. Well, I going to bed now."

I blink a couple of times and mentally start analyzing the conversation. She was very engaged, very attentive, eye contact was excellent, there was about four loops in that conversation (depending on how you count it), and, most importantly, she initiated making a deal. Up to now she's only accepted them.

It was the longest, true conversation we've ever had. And I'm thrilled!

***

This one was told to me by my husband. It seems that he found one of the puzzle pieces from the Valentine's day puzzles I had bought the girls on the floor. He picked it up and, since Sarah happened to be nearby, asked, "Is this yours?"

She said, "No. That's [insert sister's name]. I'll take it to her."

And she took it from my husband's hand, found her sister and gave it to her. Once again, involved, attentive, good eye contact.

***

They keep growing more and more each day. :)

Lots of Kids and Special Needs

Just found this blog and thought I'd share. I will also be putting it in a permanent spot on this blog because I find this author so awesome.

Name: Lots of Kids and Special Needs

Update

Another illness is going through our neighborhood. A friend of mine had to cancel a visit today because of it. One of my kids is kind of sick, but they all seem to be staying healthy so far.

Rachel is now at the syllable level for the sound "ng". I've also put our speech therapy goals on 3x5 cards for both girls so that I can integrate all of them into daily activities. It's a lot to remember (each girl has 4 goals, 2 in comprehension and 2 in production) but it seems to be working while we try to get our homeschooling schedule back on track. She's starting to remember the names of colors (green, yellow, red and blue) and basic shapes.

I'm wondering how to get Sarah interested in cause and effect. She doesn't ask as many "why" and "what if" questions as her siblings at the same developmental age. I'm involving her more in my daily activities, including cooking which is a great source for "what if" and "why" questions, and asking more questions as models for her to follow, but so far I feel like I'm hitting wall. Any ideas?

Oh, yeah... and the TV is still off during the week. It's hard, but the peace in the house is sooooo worth it.

PROVE and other things

Have I mentioned this website yet? I've found it very helpful when it comes to information.

PROVE

The full name is Parents Requesting Open Vaccination Education. They're based in Texas.

While I'm on the subject of vaccines and education, I'll go off on a major tangent and talk a little about a completely unrelated topic. There's a meeting coming up in my area, sponsored by AAPS, and it's about Obama's health care plan. It sounds like a question and answer thing as well as a way of letting your concerns get heard by lobbyists -- because let's face it, that's the group that's most likely going to hear your concerns nowadays. What got to me though was the list of questions they used to "tease" people who look at the flyer (link warning... it's a .pdf).

Inside those questions, two jumped out at me: Is medical privacy a lost cause? and Will there be any doctors left?

Now, I have heard rumors that Obama's health care plan has inside it a clause that would create a gigantic medical records database, with no opt-out and accessible to anyone without the patient's permission. I believe these rumors because Google is almost there (see Google Health as well as this post and this article from Wired), though obviously with many more restrictions. I can believe that Google and other big database players, along with many corporations, are trying to change things to make such a database even more profita... I mean, useful. ;)

There's a reason medical records are private. They're just too valuable. I don't think I need to go into all the reasons... I'm sure you'll think of them if you try.

As for the question of doctors, there was some news not too long ago that said GP's are considering dropping out of practice and moving to different fields or out of health care altogether. A woman I know who's studying to be a midwife said some are planning on becoming nurses since the only difference between a GP and a nurse at this point is that a nurse can't perform surgery. Nurses don't have to carry malpractice insurance because they're often under a doctor or specialist and the specialists can afford the insurance.

So, the choice for doctors? Become a specialist or a nurse. From what I'm hearing, it's the only way to survive financially.

Or maybe study computers and start selling medical records online. :P :)

I'm just not sure how Obama's health care plan will get rid of them. I guess I'll have to research this (if I can) during the week. At least I have this blog here to remind me.

Quick update

Sarah's doing very well. She's been handling stress better for the past week. She's communicating enough now that I'm realizing I need to stress the difference between fantasy and reality (which means she's at a preschool level there). It's not a big deal because she's starting to learn the difference, which is awesome!

I had an interesting conversation with Rachel this morning. For the first time, she calmly tried to make sure justice was kept. It started when I took Sarah's practice pad into our toddler's room (Sarah was okay with this) for him to play with. Now, mind, I'm not used to talking to Rachel about such things because she has never argued with me before like this. In fact, I was stunned for much of it.

Rachel (walks up to me): That's Sarah's drum.

Me: Yeah, it's okay, Rachel. Stephen can play with it.

Rachel (emphatic, yet calm): That's Sarah's drum. It go ih Sarah's room.

Me: It's okay, Rachel. Stephen's not going to hurt it.

Rachel (still calm, still emphatic): But that's Sarah's. It go ih her room. (Points to make sure I understand.)

Me (finally catching on): I'll put it back after he's done playing with it.

Rachel looked at me for a few moments, then turned around and went back to her room. She seemed satisfied with my answer.

She's been more picky about rules lately. It's a sign she's progressed but it's wrecking havoc with the pecking order among the kids. Up to about a year ago, our third-born was the one who acted like the eldest, making sure everyone did what they should. That shifted as Sarah progressed and the two became sort of co-eldest. But now that Rachel is becoming more concerned about the rules and acting like the eldest child (makes sense since she was born first) everything is up in the air again.

And on a completely different note, Rachel's coordination has improved quite a bit since we started giving her the flax oil. Her running is smooth now, though I can tell there's a bit of muscle weakness we need to fix, and she's starting to skip through the house on a consistent basis. And that also looks smooth. :) I'm going to test fine motor skills this week and see if there's any improvement there as well.

Drawing lessons online

For those who are interested, and for those who might know someone who is, here is a link.

Drawspace.com

If you knew your child would have autism...

It seems that someone in the UK has figured out a possible pre-natal screening test for autism. (I apologize in advance for the biased website... it's where I got the info and I'm too busy/lazy/whatever to look it up elsewhere... feel free to look the info up in other sources.) It's still very new and relatively untried. However, it's making some people very nervous... and with good reason. The eugenics movement was a horrifying chapter in American, British and, most notably, German history (for more info take a look at War Against the Weak by Edwin Black... I'm looking forward to a better source but he does a pretty good job).

I remember being involved in an abortion debate in college. The debate itself was pretty mundane with only a few interesting facts. It certainly changed my views regarding choice and free agency. But that's neither here nor there. The one thing I remember most clearly was when we were talking about the disabled. In the most intense part of the debate, one of the pro-choice women yelled, "They don't deserve to live!"

You can imagine how silent the room became after that. Every member of the pro-choice side (except the woman who had shouted) either looked ashamed, shocked, or some combination of the two. The pro-life side mostly looked as if they had expected it, though one or two looked as if they weren't sure they'd heard her correctly.

Now that I have two special needs children, I know the answer to this question myself. But for those who read my blog, I think it would be good to ask the question of yourself. If you knew your unborn child would be autistic, what would you do?

Videos from the ATC

I decided to put a link to these on my blog because the SR program has a couple of big strikes against it. One is confidence. There are many parents out there who, in spite of any evidence to the contrary, feel experts know their children better than they do. This doesn't mean experts aren't helpful, it's just that I've seen too many parents hand their special needs children to the experts like a child handing over a toy that's broken. (Thankfully, I've also seen many parents who are willing to be the main "therapist" in their child's life.)

The other problem, true of all the developmental approaches in treating autism, is time. ABA (both kinds), RDI, SR, etc. all supposedly demand a large time investment initially from the parent or a therapist... at least, if you want the ideal. It's not unusual to hear of 20-40 hours a week devoted to "therapy". In fact, the ideal in SR is to be in the playroom the moment the child wakes up and spend, in essence, all day in the playroom. Sometimes, if the playroom is a room separate from the child's bedroom, they recommend letting the child sleep in the playroom for a time to minimize transition problems.

Now, obviously the playroom is temporary. Over time the amount of time spent in the "distraction-free environment" is going to diminish until the child "graduates" (i.e. doesn't use the playroom anymore). This is also true of the other therapies as well. But that intial investment can be very daunting to parents. So daunting, in fact, that they don't even try.

That's what I like about these videos. They don't just introduce the program. The one called, Creating a Distraction-free Environment tells you how to get started creating a playroom environment out of what looks like a living room and makes it clear that even a half hour a day is great. Jonathan Levy's book does the same though he recommends an hour.

The point is, even a small amount of time every day helps. This is what I've learned doing little bits of therapy/school throughout the day with Rachel and Sarah.

TV back on... kind of

Just a quick note to say that the kids have barely watched TV today. We had a movie going this morning but no one was watching it, so we turned it off. We did watch a collection of animated music shorts this afternoon but that has been it for TV watching today. And even during that the kids danced and played to the music... they didn't actually watch TV.

I wonder if they might enjoy listening to some of the old radio shows that are on CD now. They like listening to stories and that's essentially what those old shows are. Something to think about.

We are definitely sticking with this rule next week. :)

Day Four of No TV (during the week)

I'm really looking forward to tomorrow. And what's crazy is that the kids are doing great without the TV. My husband has noticed their focus has increased and they're calmer. Even my firstborn son has settled down. And yet, I'm really looking forward to turning the TV on tomorrow. I have no idea why.

Just FYI

I'm going to post this on Homemaking Cents as well (Monday from the way my schedule looks). It makes more sense there, I know, but I'm posting it here because many kids in the spectrum struggle with immune system problems.

Flu in U.S. Found Resistant to Main Antiviral Drug

I'm a bit cynical about this article because I've read other articles that question Tamiflu's abilities as an antiviral in the first place. However, whether you're big into allopathic or holistic or whatever healing, prevention is the most important thing. Around here, that means a greater emphasis on washing hands, taking baths, good nutrition, exercise, and fresh air. I've found charts that outline the steps very helpful, especially if they have pictures. We have the one for washing hands up right now and it seems to help. I try to supervise hand washing since it gets Rachel used to putting her hands completely under the water. If I don't, she only washes her fingertips.

Can't say I blame her. That water is coooooooold... and the hot water takes too long to show up.

For those who want a little motivating reading, I recommend two Laurie Garrett books: Betrayal of Trust and The Coming Plague. Sometimes Ms. Garrett jumps to conclusions (especially when it comes to vaccinations) but most of the time she sticks with facts and deals only with what's known. Great reading for those who want to know how much impact public health has on the community. I especially enjoyed Ms. Garrett's recollection of her uncle in the beginning of The Coming Plague: he was a doctor before everything got sent to a lab and he worried that a time would come when a doctor might have to diagnose without a lab again. He felt a time would come when doctors wouldn't be able to diagnose by sight... very necessary when time is of the essence. It's a fascinating and increasingly timely topic for debate.

Day Two of No TV (during the week)

Now the withdrawal begins.

Sarah has been asking all morning for a particular movie. Everyone seems a little jittery, as if they aren't quite sure what to do. Thankfully, Becky and Sarah were resourceful enough to go play pretend with their dolls.

Ironically, the one who is having the worst time is our toddler firstborn son. He's been more sensitive than usual, more likely to act aggressive, and more clingy. It said in The Plug-in Drug that video games produce dopamine, and in the Mars & Venus Diet & Exercise Solution by John Gray it says that guys tend to be low on dopamine and therefore tend to crave whatever produces it: according to Gray that means activities that encourage service, risk, challenge, etc. Maybe TV and movies also provide a certain amount of dopamine, like video games? I don't know. It's just a thought. I just know that ordinarily my boy is not this insecure. We'll see where we are by the time Saturday rolls around. If he relaxes the moment TV comes on, I'll know something is wrong.

Rachel is the one taking things in stride. She doesn't seem to crave TV, though she loves music. I've discovered that most of the time when she watches a show, she's watching it for the music, not the story. That's changing, but the music is still her favorite part.

Day One of No TV (during the week)

Well, today is the first full day of no TV during the week. I seem to be having a harder time with this than the kids. I swear it feels like there's something physically wrong in my head.

The kids are doing great. After I finished my morning routine and we had all finished breakfast, I got out the books and we read for a while. Then, I worked on laundry. Thank goodness because one of my (bored) sons had decided to explore a box, found a bottle of maple syrup and decided to paint his brother, and a 3 ft. radius around his brother, with it in their room. I threw the clothes in the wash, bathed the boys, did what I could to clean the mess, Mr. Vinca finished up while I worked on (a late) lunch and then I just relaxed for a bit.

Sarah's playing piano. Because no one is watching TV, there's no extra noise to annoy anyone, and there's no one complaining that they can't hear their movie because Sarah's "being too loud". Rachel's in her room playing quietly: soon we'll be doing her therapy/school (the two often combine) and then math and journal work with Becky and Sarah.

As for the flax oil, we've kept up on that for the past few days. For the first time today, Rachel asked me to put a hairband in her hair. She hasn't tolerated her hair pulled back for a few years now, and she has never, ever asked. I'm more than a little stunned and I wonder if the flax oil has something to do with it. Or it could just be a natural part of her growth, or one of the results of therapy or something else entirely.

I will mention that Rachel tolerates flax oil: she doesn't really like it. Personally, I enjoy it. I like the nutty taste. It goes especially good with yogurt but works all by itself, too.

Follow up: as for The Explosive Child, I wasn't able to finish it before I had to return it. Therefore, my review will have to wait. Just thought y'all should know.

Long Chain Fatty Acids and TV

It has been quite a weekend

Over the weekend, after a binge at the local library, I was reading a book called The Late Talker: What to Do If Your Child Isn't Talking Yet by Marilyn C. Agin, Lisa F. Geng and Malcolm J. Nicholl. It's a pretty good book overall. Its strength is in apraxia, but there's also some really good information on autism spectrum disorders as well in it: many of the suggestions for apraxia work for autism as well. This is also the only book I've read that talks about insurance codes and how important it is that your provider enter the "correct" code (a topic that highlights just how crooked the whole insurance scam is no matter how useful/necessary). If you want inspiration about working in the system to get your child help, this is a very useful book.

But the part I found most fascinating was a chapter devoted to omega-3 fatty acids and their effects on children with speech delays. The book was published back in 2003 but that means little to me. The book that helped us figure out how to keep Rachel from screaming for hours in the middle of the night was published back in the 70s/80s. I only mention this so that anyone reading has an idea of how old this information is.

Anyway... at the time of the book's writing, no one knew why it helped children (just like many parents aren't entirely sure why a GF/CF diet seems to help their child). It was speculated that long chain fatty acids are one major part of myelin, the insulation around nerve fibers. If myelin is damaged, the ability of neurons to "talk" to each other is damaged as well. A lack of myelin also affects gross- and fine-motor skills.

Well, when I read that, I thought of Rachel. Her delay spreads across many areas (for example she didn't start jumping until she was five).

I'm still going to do research on it through the week to see if anyone else has followed up on this, but because it won't hurt anything, I'm giving her some flax oil I've been using for myself. I started Saturday and already I'm noticing she's calmer and a bit more interactive than usual. We'll see where we are in another month or so. If I don't see any increase in progress... well, I won't make it one of my "must have" supplements in her diet, like wheatgrass (currently given as part of Kid-e-Mins) or calcium.

In line with language acquisition, we have decided to make a new rule: no TV on weekdays.

Why? I'm glad you asked. Guilt. Lots and lots of guilt. See, when the TV is off, I've noticed Rachel interacts with her sisters and brothers more... Sarah definitely interacts more... and interaction is key to increasing language and social skills. When the TV is on more, I've noticed less interaction. I feel I would be a bad parent if I took away an opportunity for the girls to increase their language acquisition.

But the thing that pushed me over the edge was reading The Plug-in Drug by Marie Winn. There's so much wonderful information packed into this little book it would take a while to write about it, but I do want to say that it makes an excellent case (matched by my own observations) that TV, because it caters primarily to the non-verbal side of the brain, actually diminishes language acquisition. In fact, the most frightening part of the book is when Winn points out a study that showed the original studies on Sesame Street were flawed. The children cited who made progress watching Sesame Street also had increased interaction with and rewards for learning from adults. The heavy viewers (not publicized) who didn't have this interaction started to fall behind in language acquisition.

Like I said, this info matches my own experience and turning off the TV was also the advice given to us at the Autism Treatment Center because they had discovered the same thing. So, TV only on weekends.

It won't be hard. We don't have cable, we don't have good (if any) reception, and DVDs are easy to stash/hide. What will be hard is the withdrawal. :( I'll let you know if we're still alive at the end of the week. :)