To live content with small means; to seek elegance rather than luxury, and refinement rather than fashion; to be worthy, not respectable, and wealthy, not, rich; to listen to stars and birds, babes and sages, with open heart; to study hard; to think quietly, act frankly, talk gently, await occasions, hurry never; in a word, to let the spiritual, unbidden and unconscious, grow up through the common–this is my symphony.~William Henry Channing

Friday, April 18, 2014

Sam's World ~ It's Extreme

The dictionary defines the words extreme as "existing in a very high degree...going to great or exaggerated lengths...exceeding the ordinary, usual, or expected."

That pretty much sums up life with autism. 

Everything with Sam happens in the extreme ~ the good and the bad. I think it's why autism is so exhausting. Autistic life happens at a very high degree and certainly exceeds the ordinary. Everything is just more

Take for instance, Sam's view of going to school. This is his first year in school (we previously homeschooled him) and he loves it. Like he is sort of bummed that we're off next week for spring break kind of loves it. He literally runs across the parking lot to the door every morning. He is never difficult to wake up in the mornings either.

The other morning I tried to encourage him to be less Sam like in his arrival. He response was to tell me, "Mom, it's a big day!" I had a sudden moment of panic that I had forgotten something and asked him why. "Because it's a school day!" he said with a grin and off he bounded.

This extremeness is evident in all aspects of his life. Video games and television have a huge impact on him because he feels everything, he plays everything with such an intense complete focus that totally absorbs him. And when he has to be done it's almost as if he is an addict and suffers from withdrawals. It can be brutal on everyone involved.

What it looks like is hard to explain. He'll be agitated and antsy. He'll have a difficult time controlling his mouth. And let me just be real honest here, there is nothing worse or harder to deal with then the persistence of an autistic child who will not and cannot control their words. The sheer ability for repetition could be used as an instrument of warfare. I say will not and cannot because there is a certain amount of this that is willful, a choosing to persist. But there is a large part where he literally and physically cannot stop himself from speaking, from saying the same phrases over and over again. He is utterly out of control and way way over the top. This is made even more of an issue with puberty. Girls get all kinds of emotional and boys just want to fight something.

It has to be terrifying for him. That feeling of complete and total loss of control, of feeling and acting like he is going to fly into a million little pieces. We like to think that total abandonment of self control would be freeing but the opposite is actually true. Spinning wildly out of control is like that horrifying feeling you have as you're falling out of a tree and there is no way to stop yourself from hitting the ground.

So we work to ground him...to make him feel safe...to physically connect him with the world. Currently we're in a grounding mode. Monday through Thursday there are no electronics. This means no tv and no computer. On Friday, Saturday and Sunday he is allowed half an hour of computer (internet) and maybe, but not back to back, half an hour of the Microsoft paint program. He is allowed to watch one movie on Friday and one movie on Saturday.

It may sound like we're talking about grounding as in restriction, (That's it young man! No tv for two weeks!) but that's not really what we mean. It's more like we're grounding him in the sense that we're acting to connect him with the foundation of reality and helping him attach to the real world and find his place in it.

We all need that. We need people and practices in our life that ground us...that connect who we are with the real world outside of the ones that we can escape into through entertainment or the one we can create in our own minds that are shaped only by our own perspectives and inner dialogue. Not a safe place for anyone, autistic or not.

There are other things we do to help ground him in a physical sense. Big heavy work helps him almost as if the added weight forces him to feel the ground underneath his feet and helps him find a physical location for himself. This is one of the reasons that weighted vests and blankets are so helpful with young children in therapy. It seems to connect them to time and space in a tangible way.

I mentioned that Sam is easy to wake up in the mornings. In this week's Sam story I'll share a little about that routine. Every morning his alarm goes off at 5:30. For a while he was getting up and coming to ask me to come get him at 5:45 which is his actual wake up time. (Mine is at 5) Before bed one night he wanted to remind to wake him up at 5:45 and said  he was tired of having to get up and remind me at 5:30 every morning. We had a lengthy discussion about the fact that I certainly didn't need him to be up at 5:30 to remind me to wake him up at 5:45. His alarm apparently is set for both times because I hear it the second time as I am coming into his bedroom. Practically every morning I also I hear, "You're late."

Rotten boy.



Tuesday, April 15, 2014

The Bird Watch Continues

I hope you aren't getting bored with the bird posts because frankly I am still utterly fascinated. The little things are just so incredible to watch.

I've been wanting to get a particular photo of them and have been completely frustrated with my lack of success. Their hearing is some kind of crazy and even when I am being my most stealthy (and I have five kids so I can be stealthy!) I wasn't having much success.

Basically I wanted to get a silhouette of them on my door. Nothing fancy, I've just enjoyed seeing their little outline as I walk past the door so I thought it would be a cool image. I almost had it the other day, too.

The father (or baby daddy as we say) was perched on the inside of the wreath and his silhouette was perfectly outlined. My camera was close at hand...I walked very quietly up near the door...sloooowly raised my camera and...

Tried to change my exposure so I wouldn't blow out the image and the clicking sound caused him to fly away.

At that moment I realized that if I wanted the image I was going to have to put the camera on auto and hope for the best. No time to get all artsy.

Today, when I wasn't even thinking about it, I saw him land on the wreath again. Moving quickly to grab my camera I flipped it onto auto mode and sneaked back into the hall foyer. He was still there!



A few hours later I noticed that the mama was on her nest with her head turned at just the right angle to see her silhouette if I stood on my tippy toes. I grabbed my camera and managed to get the shot of her.


(The bird like shape at the bottom is a leaf from the artificial flower that decorates the wreath.)

Technically speaking they aren't the greatest images in the world. The shadows are uneven in their lighting  but they still make me happy. 

I can't wait for the babies to be born. Although from what I've read the mama stops cleaning up after them at some point which means I can expect quite an icky mess in a  few weeks.

Not sure I'll post a picture of that though.

Monday, April 14, 2014

Sometimes

Parenting is hard and sometimes it can be really hard.

You have to make difficult decisions and then follow through with them. And sometimes you can explain the reasons behind your decision and then sometimes you can't.

Everything we do should be done for the benefit of our children...for their good. Even when they don't think it is.

Our goal with every decision, with every act and moment of discipline is to strengthen our children in their faith, in righteousness and obedience.

And sometimes we screw it up.

Sometimes you realize that all the correction hasn't been a lifting up but rather putting down; oppressive instead of liberating.

Those are interesting words aren't they? In relation to sin and correcting I mean. I haven't thought about it that way, not really. But Scripture is full of the imagery of God lifting His people up, of raising them up out of the pit.

Our correcting, not just as parents but as brothers and sisters in Christ, should be done with that same idea in mind. We correct, not so that we can defeat the sin in our children's hearts, but so that we can lift them up out of the pit of their sinfulness.

It is a battle to be sure and sin is the enemy and we do want to defeat it. But if we are so intent on defeating the foe, on waging war against the sin itself, it is quite easy to forget the personhood of the one that we seek to liberate.

I'm not saying that we should not correct ~ far from it actually. But our correcting needs to be focused on the redemptive work in the mind and soul and heart of our child and not just the big black ugly sin.

Why? Because we want to shape and form a heart that not only hears correction but loves it. Because sometimes we want obedience in little things because there will come a day when He will want obedience in big things.

Titus2Tuesday

Test Kitchen #54 ~ Remix Addition Beef Pot Pie

A few test kitchens back I shared this recipe for chicken pot pie and mentioned that I wanted to try it with beef.

beef pot pie recipe

Well, I did and it was fantastic! I think it may be more of a favorite in our house than the chicken version. I cooked the roast all day so that it was basically falling apart and swapped out the veggies so that we were using potatoes, mushrooms, chopped onion, and carrots but you could keep them the same and it would be just fine. (I may or may not have only used carrots, celery, and mushrooms once since that was all I had on hand.)

A mighty fine meal that feeds quite a few...can't go wrong with that!

beef pot pie recipe



Thursday, April 10, 2014

Sam's World ~ A Little Clarification

I'd like to clear up, or rather clarify, something I said in my post last week.

"This may surprise people and may even anger some but I don't care about a cure. I'm not really interested in knowing a cause."

I'm not taking back what I said but in and of itself it could be taken the wrong way - as if I don't really care about my son. The road of autism is pretty broad and those words, not quite filled out, could make someone who is walking that same journey on a different part of the path feel like they are doing something wrong if they are concerned about a cause and a cure.

For us, for Sam, we live with the reality that he was born autistic, he is autistic, and he will be autistic. It is a true truth fact. It doesn't mean that we haven't second guessed what could have caused it. Was it the restoration paint job Rob was working that exposed us to lead paint during my pregnancy? Is there any connection between my gestational diabetes? Looking at great grandparents, specifically our grandfathers, is it a genetic thing?

It also doesn't mean that I haven't wondered in the quiet of my own mind and heart what Sam would be like as a typical thirteen year old kid. But I rarely go there because I just can't see him any other way...his quirks, his issues, his struggles, his sense of humor, his uncanny way of speaking so simply and his plain insight, all of his strengths and weaknesses make him who he is and whether that is all due to his autism or not really doesn't figure. It's who he is.

Autism isn't the definition of who he is...it's just part of who he is. Like I have green eyes but that doesn't make me who I am it's just part of who I am. And if I am so focused on trying to cure this part of him then I run the risk of missing out on who he is. And, in the words of his father, "If I had a normal kid I wouldn't have Sam. Sam is more...Sam is Sam."



The are two other considerations I have about the whole cause and cure subject.

First, there is a ton of money and effort being put into what causes autism and finding a possible cure. But there is precious little in place for autistic adults. My son may not do it exactly the same way but he is doing what every living creature born on this planet does ~ he's growing up. And if all of our energy is focused on one small percentage of time that makes up a human life then there is almost nothing left to help him or families with autistic adults cope with the post infant and adolescent world that we will eventually live in. We're already experiencing this to a certain degree and he just became a teenager. (Side bar: There is no doubt that early intervention makes a tremendous difference with autism. I am all for putting a structure in place that meets the needs of the family with a young autistic child. But I think more needs to be done to help and assist those same families as their child grows.)

My second consideration may seem wonky and disconnected at first.

90% of all pregnancies with a prenatal diagnosis of Down Syndrome end in abortion. What do you think will happen if a genetic cause is ever discovered for autism? Our society views any form of disability as a detriment and value of life is balanced on the razor sharp edge of quality of life determined by some obscure feeling or humanistic reasoning. Anything not normal, not typical, is a liability and we are not a people that tolerates the burden of imperfection well. But the value of human life is in it's being...it's very existence as the image bearer of God.

Sam's life, autism and all, is not some tragic burden but a constant source of delight for our family. The struggles and difficulties are legit, and at times, exhausting. But he is worth it...just as he is. And we know that God will use Sam to display His glory in a way that is enhanced by his autism.

Now, all that said doesn't mean that we don't do things to work with and improve life for Sam. While we
may not be looking for a cure we do want to help him connect and be a functioning productive part of society. There are things, like discipline and therapies, that are of great benefit and they should be utilized as much as possible.

If you've spent any time on the blog at all you know we do a gluten free diet with Sam. (You can read more about why here.) Since last year I have come across two websites that are quite helpful to those who do gluten free regardless of the reason. What I really like about them both is that they share brand names that are easily found and accessible.

This first link is really a link to a bunch of links. The food stuff is listed by category though so it's easy to navigate.

The second link is to a really great gluten free blog. The Gluten Free Spouse has a really great list of normal everyday brands that are gf. Like off the shelves of Walmart or Publix kind of brands so it's really helpful.

This week's Sam story is a food related funny from several years ago when we were introducing meat into his diet.
Rob: "Sam, why won't you try this chicken?"
Sam: "Because it's made out of meat."

Made perfect sense to him.

Wednesday, April 9, 2014

Bird Watching Update

We had a slight moment of panic concerning our front door guest when Sam bounded into the living room and said, "Yep, Mom, you were right! There are eggs in the nest!"

Turns out that he reached a hand up and picked one up and checked it out before replacing it. We were all a little freaked out, including him, when we explained that if we handle the eggs the mama might abandon them.

Thankfully she did return and is on the nest often which means we are not using the front door often. It can't be helped all the time but we are doing what we can. There is the occasional good-natured mumble about birds controlling our lives but everybody is a bird watcher in our house now.

While she was gone for a bit yesterday I pulled a stool over and managed to snap a quick shot of the little eggs. There are five little eggs in that tiny little nest. Their home is going to be all kinds of crowded when the little guys hatch!


I did some more research and we can expect the babies sometime towards the end of next week probably. The incubation period is twelve to fourteen days. They stay pretty quiet for the first week or so but then apparently can get quite rowdy during dinner time. The will stick around anywhere from ten to nineteen days before the fly the coop so to speak.

Interesting fact: house finches are one of the only breeds of bird that feed their young only plant matter.

I'll keep you updated on the birth...hopefully I'll be able to get a few pictures after their arrival.