My opinion on vaccines

I am not anti-vaccine. 
I am not pro-vaccine. 
I am pro-information. 

I want people to know the risks of vaccinating and the risks of not vaccinating.  And then I want them to be able to CHOOSE what is right for their child or themselves.  I do not want the government to force people to vaccinate.

I want people to be open to the reality that vaccines sometimes cause harm.  And I want people to realize that the pharmaceutical companies are not completely open about this, and that their studies and research are usually done by their own teams or by some backdoor-related company.  Many "independent studies" are not truly independent.

I do not "know" that vaccines was the trigger that caused our sons to develop autism.  I do know that after our youngest received his first MMR (at about 3 1/2 or 4 years old) his speech/babble regressed.  He did regain it, but only after 3 to 6 months.  At this point, he already had a diagnosis of autism.  Since then, he has not received any vaccinations.

End of 2013

Testing.....Testing.....Does this thing still work?

Time to dust off the keyboard and blog again.  2013 was such an up-and-down year.  I hope 2014 will be better.  To be honest, I hope that in 2014 our Lord Jesus will come again to earth and take His church to heaven.  I see the decline of society, of morals, and even of some churches.  I'm ready for heaven, and tired of the decay of this world. 

Matthew 24: 30-31
And then the sign of the Son of Man will appear in the sky, and then all the tribes of the earth will mourn, and they will see the Son of Man coming on the clouds of the sky with power and great glory.  And He will send forth His angels with a great trumpet and they will gather together His elect from the four winds, from one end of the sky to the other.

Joy and pain.

Autism can really take the pleasure out of life.

I used to enjoy traveling and long road trips, but with two autistic boys it's more like a chore.  I loved spending time outdoors and still do, but if the boys are with us I'm constantly on guard to make sure one of them isn't running off.  I used to like birthday parties for kids, but those are usually a nightmare, or else have a bad aftermath due to unusual foods the boys have eaten.  

Church dinners, eating out, hiking, camping, and more. 

However, life isn't about pleasure. 

Love is sacrifice. 

I am willing to do this. 

But I am struggling to have the right attitude as I do the right thing. 

Pet Peeve #13

I try not to have a lot of "pet peeves", or I could go around being annoyed all the time.  But this is one that I frequently run into.

I hate it when I feel like I haven't accomplished much, and the boys come along and undo what I've done.  Like spilling juice all over the kitchen floor.  Or pulling wet, once-clean, laundry out of the washer onto the floor.

"Take Advantage of This Deal!"...........or not

When I get advertisements for "Get-aways" I make a skeptical sound and go on to the next thing. 

Family vacations?  It's more like pack-up-all-your-problems-and-take-them-somewhere-besides-home.  

Yes, we take vacations.  And we enjoy seeing other places and people.  But it's not always relaxing.  The name doesn't really fit.  We've had to change our ideas about what vacation means.

And "get-away"?  Not really.  It's difficult for Hubby and I to really get away.  It takes lots of planning beforehand and other people's help. We do make an effort to try and have a day or two away from the kids at least once a year, and sometimes twice in a year.  

That's just reality.  

I really try not to be too cynical, and I'm not bitter.  It's just the irony that gets me.  I feel like life mocks me sometimes.  I either have to cry, or laugh.  

I'm sure you know what I mean.

Perspective

I was on the verge of complaining on Facebook about poop. How tired I am of dealing with poop, changing diapers for the last nine years now. But I hesitated, thinking perhaps that it is more information than people really want to know. And who wants to hear complaining? So I scrolled down through my news feed while I decided whether or not to vent. 

That was when I found perspective. 

My second cousin and his wife are expecting and recently found out that their unborn son has Trisomy18. They will likely get to spend just a few hours, if that much, with their baby when he is born. 

I didn't post my complaint. 

What I really want to say

April was such a busy month.

So, of course, I've been feeling the urge to blog again. 

Facebook has been a great way to connect with people.  To communicate and actually get feedback.  I don't really get to have conversations until my husband gets home from work, unless someone calls me on the phone or I go somewhere.

But I don't always say what I really want to say on FB.  When you have 200+ friends, you don't necessarily want to share everything with everyone.  Nor do you want to say things that would offend someone and create bad feelings (I don't want to, anyway).

So, I think I'll be coming back here more often now.  There are lots of things I want to say.

The puzzle

Just putting out some thoughts and observations...

Autism.  Research.  Causes.  What works.

For a long time (relatively), autism was considered purely behavior-related and psychological/mental.  It was treated as such, with treatment focused on different methods for changing behavior.  Utilizing home environs and the family, or the school environment and teaching methods; steps were made and valuable methods were developed and understanding was gained.   At some point attention was given to sensory problems, and ways of limiting certain input and giving needed input were developed.  All of this was good.

Then, parents and a few practitioners and researchers started looking beyond behavior.  There are several medical/biological issues that are common among kids with autism, including malabsorption of nutrients in food; seizures; gut issues--diarrhea, constipation, bad gas, yeasty-smells, abdominal pain; susceptibility to viruses; susceptibility to ear infections and respiratory infections; unexplained rashes and eczema; and the list goes on. 

People started seeing these as pieces of the puzzle of what autism looks like in an individual.

Some see these co-morbidities (two or more coexisting medical conditions) as perhaps underlying causes of behavioral problems rather than a separate issue.  For example, if a child has a headache and can't tell you they are hurting and therefore can't get relief, they might get upset easily or even hit their heads.  Or if a child's stomach is hurting and again they can't express this, they may curl up, rock back and forth, or lay on the floor on their tummy.

Some began to see autism as biological, as well as psychological.  They already knew the nervous system is involved because the brain is affected.  But, somehow the immune system and the gastrointestinal system are also affected.  Perhaps other systems as well. But which came first?  Did the autism cause these biological issues to appear? Or, are there biological problems in the individual which add to, or even cause, some of the problems of autism? 

At the same time, researchers realized that autism is not entirely genetic, so there must be environmental factors that contribute to autism.  Sadly, I must say that more research funding has been given to trying to determine the genetic components (isolating what genes are affected, etc.) than to discovering which environmental factors contribute and can be changed/controlled. I saw an article very recently that said a Stanford study showed that genetics accounts for 38% of the risk for autism, and environmental factors account for 62% of the risk.

So what we have ended up with is different groups of people focusing on one of these issues or one of these biological systems and trying to address the problems and seeing if the individual with autism benefits.  They have met with varied success.  A few think-tanks, like the Autism Research Institute, have tried to bring all the different area experts and pioneers to one place periodically, in hopes of putting some pieces together and glimpsing what the bigger picture is.  Ironically, the mainstream medical community do not often attend these, although they are invited.

Let me give you some examples of these different groups.

Pediatric GI doctors have looked at the gut and intestinal issues and recommend testing for diseases/disorders like Celiac Disease and GERD.  These issues are typically treated with a change of diet.  They also look at the poor absorption of nutrients, pointing to the body not breaking down the food correctly, or faulty intestinal lining letting things into the bloodstream that shouldn't be there.  So they recommend enzyme supplement for proper digestion, and pro-biotics and other things to try to correct the lining of the intestines.  Some individuals with autism have found some help with these treatments---less severe symptoms, relief from digestive problems, and even some disappearing of autistic traits.  But not all are affected to the same degree by these methods, and some not at all.

Nutritionists and dietitians have looked at the diet.  There are definitely problems with an autistic child's typical diet:  self-limiting to only a few foods, unhealthy eating habits both in quality and quantity, resistance to new foods or a new place of eating (restaurants, new school).  So this group of people have taken their knowledge and developed specialized diets.  And oh, the number of special diets there are out there!  They take out foods.  They put in special foods.  They test for food allergies.  They recommend vitamin supplements because the person's diet doesn't have enough of something.  They recommend special eating therapies for the child who is throw-a-tantrum-hurt-myself resistant to eating foods other than the the five that they like. (I am not lying about this.  The saying "they won't starve themselves, just wait them out" does not apply to some kids with autism.)  There are special diets to help heal the gut problems found by the GI doctors.  There are nutritionists that will do tests and ask questions about the individual, and customize a diet specific to that individual. 
If I sound critical or cynical it's only because of the sheer number of different diets and opinions on these diets.  Many individuals with autism find a lot of help and hope by changing their diet.  Again, some do not.  But it's not something that will hurt them or make them worse.

A few go a little further on the diet/nutrition aspect and look at the eating habits of modern Americans as opposed to other cultures, or opposed to eating habits from 50 to 100 years ago.  They recommend getting away from processed foods and eating natural and whole foods.  They point to pesticide-treated and genetically modified crops and advise buying organic or from local farmers.  I see some merit to this and think these are good ideas for all families, regardless of whether they have a member with autism.  However, it is both expensive and counter-cultural, therefore it can be difficult to follow.

Can you see how this could be overwhelming to the parents of a child with autism?  And I haven't even touched on the immune system issues which would go into vaccination schedules, overuse of antibiotics, drug use during pregnancy, etc.  Or the neurological experts that look at rates of development, neurotoxins from metals and other sources, the kinds of food that benefit the brain, etc., etc.! Where do you start?

Very few of the treatment methods I've mentioned are covered by insurance except for maybe a doctor visit, and (rarely) a few lab tests.  Granted, I can see why an insurance provider would not want to cover these, if I look at it from their perspective... Few of them are proven to be effective, many of them help some patients but not all, and just the number of treatment possibilities---where do they draw the line?

So you can't do all of these treatments at once, but you don't want to do them one at a time because you don't want to wait that long.  Usually you do two, three, or even four. It depends on your resources of money, time, people, and availability of services in your area.  This factors into the question of what treatments are most effective, because if you are doing more than one treatment at a time and the child makes progress....which treatment was the one that helped?   Was it just one, or was it a certain combination of methods?

I'm not sure exactly where I am going with all of this.  Possibly, this is why when I look into current research, articles, and new treatments I get overwhelmed and depressed.  Is there something more we should do?  Is there anything more we can do right now?

Pharmaceutical companies fight against vaccination questions and try to find something they can patent and sell to all these families.  Doctors and the CDC have difficulty accepting what they consider "complementary and alternative medicine" treatments.  Industries try to comply with stricter regulations, and the EPA et al. gets more money in their tills.  These are blanket statements, so yes, there are exceptions.  The ones with a child or other loved one with autism are usually those that step out from the system and do their own research. (sorry more cynicism)  There are "politics" even in the world of autism research.


It definitely seems like we are seeing a fragmented picture puzzle, with pieces still missing, and connections not being made.  This is one reason why you often see a puzzle piece as part of the logo of autism groups and autism awareness events. 

Every parent's dream is that one day all the pieces will be seen and put together, so we can help our beloved children to live out their dreams and reach their full potential.  In the meantime, love them and love us.  See beyond the behavior problems to personalities.  Beyond disabilities to abilities. Beyond the oddities to the beautiful.

Slow and steady wins the race

That's what I told myself today.  I find myself with more kid-free time (cue: applause), so I am attacking the house again.  It's a little daunting.  Perhaps I should say overwhelming!  But getting started is the first step.  I have a tentative plan in place.  (All my plans are tentative, because in this house you have to be flexible!)

I think part of the problem last fall was that I could only do short projects; and even then, I would likely get interrupted at some point.  Instead of 3.5 hours each day, I now have approximately 7 hours.  This allows for errands, laundry, dishes, meals, and all that other normal stuff, PLUS the re-organization that this house desperately needs.  For the first time that spring garbage---I mean, garage---sale actually looks do-able!

Today I reclaimed part of the living room and filled a large box with an assortment of toys, clothes, and books to sell.  That may not sound like much, but I'm just getting started and "slow and steady...." ---you know. 

I'm going to keep at this room until it's done, then go on to the kitchen, etc.  I am organizing and cleaning as I go; using the four-box method right now.  If you don't know what that is, I can explain some other time.  I found a great website on home organization with articles about de-cluttering and home storage ideas.  Once I reach the boys' rooms, I will need to do some assessments of available storage space and probably rearrange some things. 

And, yes, I am still making it a priority to take good care of myself and my family.  The house has always come in second to these.  That is why it needs a major overhaul. 

This is part of what I've done. Yes, the sofa is broken.  It's going to go soon. Go to the dump, probably.
 

Hello,

Courage.  I did it again.

I usually am so afraid of doing the wrong thing that I do nothing, and so miss the opportunity to do good.

It may not have done any good, but I did what seemed right and good.  And afterwards, I was glad.

Thank you

2012

Yes, I know January is almost gone.  But in case you haven't noticed, I don't blog every day so I'm just now getting some things posted.  (Not that I don't want to blog more.  I just don't have the time.)

I have been thinking about this year and what I want it to hold.  I don't make resolutions, but try to create new patterns and habits.  

This year I want to be especially sensitive to the leading of the Holy Spirit; and then courageous to do or be or say what He leads me to do and be and say.  This (non)resolution has already led me to do a few things that I might have been scared to do a few years ago.

Courage.

"For God did not give us a spirit of timidity, but He has given us a spirit of power and of love and of calm and well-balanced mind and discipline and self-control."   2Timothy 1:7(Amplified)

Diet changes

I haven't talked about the SBP diet for several months, so I thought I'd let you know how things are going and where we are...

The diet made some difference in their behavior and progress, but not enough to offset the social isolation we started to feel.  We were not being ostracized, but we were having to turn down invitations and avoid certain social activities in order to stay on track with the diet.  There is already a certain amount of isolation felt by families with kids on the autism spectrum: embarrassment over meltdowns, kids not adjusting well to new situations/people, that feeling of different-ness from others...all leading to the feeling that it's just easier to avoid those situations.  

So we will continue to stick to the diet at home, but we will go out to eat with people and go to parties, etc.

"There's no place like...grandma's house"

If you come to my house you won't see perfect.  But my family is more important than my house. And the inside of ME is more important than the inside of my house. 

However, I probably won't invite many people to my house until I can get some major cleaning and organizing done.

I just don't know how to get my house to a clean state and keep it that way.  I may not be able to do that right now.  There are limits to my time and energy and the house is not always my top priority these days.  It might bother me that the walls of every room have some artwork on them, but I will not stress about it.  (At least, not all the time.)

Giving a little grace to myself.  And if I come to your house, you won't hear me complaining about dust or a messy room.

Days 2, 3, 4, etc.

I've made some progress on my house resolution, but it's been S-L-O-W!  I haven't been working on it every day.  Some days I have to run errands or do something else.

I spent two mornings going through NB's clothes; weeding out the too-small and searching for winter things in the right size.  I thoroughly cleaned his room and vacuumed and cleaned the carpet.

Another day I went through my own clothes, but I made only a small dent.  I need to go through PJ5's clothes.  He will need some winter things, but he is being very picky about his shirts lately, so I better take him with me.  That means a Saturday shopping trip.  I also need to go through the toys, and that will be a multiple-day project.

On another (somewhat-related) topic, fall busy-ness is starting to show up in our schedules.  The boys have fall break this week, which means two days off of school.  This weekend is Faith Promise (extra time commitments) and a relative is coming into town to renew their vows on a special anniversary in the same chapel where they were married.  Personally, I look forward to both events, but we'll see how the boys react to all these variants in their schedule.

We're not far away from our annual Ladies Retreat, and I'm really looking forward to that!

I could say more, but lunch-time is over and duties call! 

Day One

I did okay.  Not spectacular, but good.  

I worked in the kitchen and the laundry area.  I mopped.  And mopped.  I cleaned counters and did dishes.  I cleared off the table of unnecessary items (which chore has to be done regularly at our house).  I know that doesn't sound like much, but it took some time.

I realized that some household tasks (namely, mopping) are an aerobic exercise when done for a long stretch, so I had to stop once-in-a-while to catch my breath and get a drink or snack.   I was burning calories, you see.  

The next day I took a nap in the morning, because I had been up in the middle of the night for at least an hour with a fussy, but not sick, kid.  I think he had a bad dream.   If I don't get enough sleep I drag the rest of the day; it affects my patience level; and it can cause flare-ups of IBS.  So, I do take a nap when I really need one.  My husband understands and encourages this.  He is pretty awesome.

Today I need to spend some extra time preparing for Bible Study tomorrow night, so we'll see if anything else gets done this morning.

Fall cleaning

I've heard of "spring cleaning", but not fall cleaning, so maybe I just made that up.  I've heard of fall pruning, and I'm going to do some of that, too.  And I'm going to blog about it.  Exciting, eh?

I'm blogging about it because I want to use this to hold myself accountable to my plans/goals. I will report my progress and maybe even post pictures..."after" pictures, only.  Either it will help me remember later that I can do it, or else it will make me realize that I can do better. 

My house is in a sad state, owing to a very hectic summer.  Add up a new diet that takes lots of cooking time, two messy boys at home pretty much all day, and excessive heat that makes it impossible to go outside for long and saps my energy.  That was my summer.  I am too embarrassed to have anyone in my house right now.  I am determined to do something about it now that the boys are in school again.  NB is not going full-time yet, so that gives me approx. 3 hours with an empty house each morning.  The first half hour is set aside for personal devotions, and then some days I have to run errands that would be difficult with the boys.  But that still gives me some good time to tackle this project.  MAJOR house cleaning.

The fall pruning I am going to do involves the boys' and my closets, the toy shelves and bins, and book shelves.  We are still in a small house, so it's time to simplify things and get rid of stuff that is outgrown or not used.  PJ is going to work on the garage where we have put boxes of clothing to either give away or keep.  The problem there is that the boys were out there in the spring and scattered everything all over, so it all needs to be re-sorted and marked clearly.  (We have a lock in place now to keep them from going out there without our knowledge.)

So, I will update here about how it's going and my non-readers can hold me accountable.  Hmm...

Spiritual Training

Every night, I (or my husband) prays aloud with PJ5 before bed. He sometimes ignores, sometimes listens, and on rare occasions says "amen" after we finish. I also pray aloud for him when he gets hurt and is very upset (overreacts), asking Jesus to help him feel better. Sometimes I pray aloud when he's crying and I don't know why he is upset. It's a comfort to me, if not to him.

Last week, he got hurt. I don't remember how, and it wasn't very bad, but he went and laid on his bed and cried (as usual). I went in and was trying to comfort him and calm him. In the middle of his crying he blurted out "Jesus". I said, "Do you want to pray and ask Jesus to help you feel better?--Okay" (fyi--I often answer my own questions with only a short pause because he never answers.) So I began my short prayer and this is what happened.

Me: Dear Jesus,-
him: Jesus!
Me: help Paul John to feel better-
him: better!
Me: in Jesus' name-
him: Amen!
Me: Amen.

He interjected those words without me pausing, which I didn't do because he never responds. And he said amen before I did, but he knew it was coming because I always end my prayers "In Jesus' name, Amen." He also kind of blurted out each word, because he was still crying and sniffling. He did seem to calm down better after that, but I was a little in shock and went to find my husband and see if he was near enough to have heard.

I don't know if that counts as his first prayer or not, but I'm still glad it happened, and finally feel like some of the training he gets at home and church is actually sinking in.





(explanation: In case someone is reading this that doesn't know our situation, PJ5 is 7 years old, with autism, and very little language skills, though he has made some good progress in the last year.)

Random thoughts

I realized that there are 9 mess-er-up-ers in the house and only 2 clean-er-up-ers. I also realized that I now clean up after 7 poopers!

When I get tired and cranky, I get sarcastic. Not pretty.


After today's trip to the store, I think I'll go back to staying at home and letting the boys play and watch Veggietales. Then I'll do my shopping in the evening by myself.

I really wish the "Cheeseburger Song" had never been written. Paul John sings it every time I fix him a hamburger...which is about once a day.

I really would like to set a record for the coolest August. Just once. And then maybe the warmest February.

I don't like talking to strangers, so I'm a little proud of myself for talking to some this weekend.

Holiday

Every year we go to a cookout with family and friends on the Fourth of July. We had to decide how to handle it since the boys are on this special diet. There would be lots of chips, soda/pop, and sweets---all of which the boys can't have on this diet, and all of which they LOVE.

We discussed several options beforehand, ranging from "not going at all" to "letting the diet go" for one evening. We ended up deciding to fill the boys up with food really well and then arrive about the time that people would be finished eating and just hanging out. We miscalculated the time and the boys got there right about the time the food was set out for people to eat.

Fortunately, it had rained and cooled just a bit, which allowed us to keep them playing outside most of the evening. And they were full from chicken and sweet potato fries. But we still had to run intervention: meaning, running to take away the can of pop from NB, running to take away the cupcake from PJ5, running to take away the chips from both of them. Lots of running. I also let them eat things from the "moderation" list, which meant that PJ5 ate quite a bit of watermelon.

Despite our running, they got little bits here and there. So, today I am watching for signs of regression or struggles in areas that have improved lately.



(Oh, and I didn't get to see any live fireworks. Only a few illegally set off in the neighborhood. Not because of the diet, but because the boys were muddy and needed a bath, and hubby didn't want to stay up late then get up early for work. In his defense, he told me I could go and he would stay home with the boys, but I didn't really want to go by myself)

Knowing

I was thinking: wouldn't it be cool if we could tell someone was a Christian just by looking at them? For instance, maybe every God-follower could dye their hair blue. Or every disciple of Christ should have "disciple of Christ" tattooed on their right forearm. Hmm....

Or maybe, every true Christian should have a face that reflects peace and joy, and their actions should show patience and kindness.

"they will know we are Christians by our love"

Do people know? Do we look different? Do we act different? I have heard some people say the people in the grocery store were kinder than the ones they met at church. What has happened to us?

If you feel convicted by this, I do not apologize.
If you have been mistreated by someone who claims to be a Christian, I do apologize.

We are not perfect, but there is One who is perfect and His love extends to everyone. We are supposed to reflect His love and grace to others and sometimes we fail. He never fails.

Isn't it terrible---awful---condemning---that we should have to say to someone, "Look at Christ, not at Christians."