into the future...
Home » May 2013
When you hear of someone with autism you generally probably think of someone who doesn't speak. And in the beginning Sam was non-verbal. But now?
He talks a lot. I mean a lot. Like sometimes I am telling this kid that is supposed to have communication issues to be be quiet.
Life with autism just isn't what I expected it to be.
I didn't expect his fascination with words. Hours can be spent on mad libs and, honestly, they just aren't that funny - at least not to us so called normal people...to Sam the hilarity just keeps on a coming.
Or the elaborate stories he would develop for all the characters his imagination gives birth too.
I didn't expect how much he enjoys the swimming pool or that his body would be affected by the chlorine. Every time he swims he has to take at least a 30 minute Epsom Salt detox bath. (Very grateful that there was something we could do other than not swim though!)
I never expect what will come out of his mouth because apparently there is no filter in his brain that slows down what he is going to say. Which means that even if you're sitting at the dinner table with guest and he has a sudden pain in a private area he will grab said private area and he will moan loudly about his groin.
It also means that if three hours after you're home from the grocery store you realize that a bag of frozen food stuff was somehow left in the car and you say "Crap!" within earshot of Sam that he will, for the next ten minutes, label you a "curser".
I didn't expect his sense of humor or his willingness to mimic various accents. He does this Brooklyn kind of one that makes me laugh every.single.time.
Because his brain doesn't process fear the same way ours does he lives so buoyantly. He's not slowed down by thoughts of failure or weighted down by what if's. He gives no thought to what someone may think of him.
I didn't expect that his love of music would also spawn a love of dancing. The boy feels the beat down in his bones. But he still dances like a white boy.
And who knew how enthralled he'd be with pregnancy and how life begins in a mamma's tummy? It amazes him and his fascination has no bounds...or boundaries sometimes, for that matter. And he's always concerned for the pain the mothers will face so he prays very specifically for all our pregnant friends, of which there are plenty at the moment. To Sam this is a good thing because he just loves babies.
And that is something else I didn't expect: his capacity to love. His heart is huge and open - even if it is unfiltered and awkward at times. It's genuine and clean...free from bitterness and is never fettered with past offenses or grudges.
I expect that our lives would be a little happier and we could love a little better if we all lived a little more autistically.
Over the weekend I had a conversation with some friends about doing things that please our husbands. I specifically mentioned keeping my hair long because I know Rob likes it that way and other preferences he has about how I dress.
For some women the idea of dressing a particular way to make a man happy is abhorrent and dated. It seems terribly antiquated at best and rather chauvinistic at worst.
But I like dressing in a manner that I know attracts my husband to me. Why wouldn't I? It's a simple thing to please him...choosing styles and colors that I know he likes on me. He likes skirts for instance, so I don't mind wearing them often. At the moment I happen to be in a pair of shorts though. He doesn't mind nor does he expect me to wear only what he wants me to. Because he knows that I am receptive to his likes and dislikes and that information helps govern my choices.
A few weeks ago I blogged about our husbands needing hospitable grace from us. I've been thinking about it since then and I really think we need to take that idea a step further. Our husbands need hospitable wives. And I don't mean they need to know they can bring company home or invite people over for dinner whenever they'd like.
I mean we should be hospitable to him.
What does that even mean? I'm glad you asked because like I said, I've been thinking about it.
The word hospitable means "promising or suggesting generous and cordial welcome; offering a pleasant or sustaining environment."
Obviously there are ways that we can be welcoming and hospitable in how we govern our homes but I'm talking about something more than that...something a little deeper and more personal than that.
Would your husband describe you as welcoming? Does your interaction with your husband promise or suggest that you are receptive to him? I realize that this type of language can be interpreted to only apply to the physical intimacy between a husband and wife but I think if we cultivate an attitude of being hospitable to our husbands in other areas a level of emotional intimacy will grow.
Does he find you to be generous and welcoming to him in general? Or does he ever feel like he's just another plate of food for you to prepare or load of laundry to wash? While I think that being hospitable is more than how we greet them at the end of the day you should ask yourself how do you react when you see him after a separation of any length? Do you allow your eyes to light up? Do you smile and turn toward him? If he arrives somewhere after you do you move to be by his side?
Does he find you to be a pleasant environment for his thoughts? Can he share what he is thinking and dreaming about and find you to be a place where those things are free to grow wild without criticism? Sometimes in our desire to be a helpmeet I wonder if we are too critical or practical; maybe feeling like we should play devil's advocate on a regular basis to help him work through various issues.
Does your husband find you to be a hospitable playmate? Seriously, when is the last time you played with him? I'm talking flat out being silly doing something ridiculous? Provoke a pillow fight...ambush him with a nerf gun, whatever. Just something that makes you laugh with each other. Have you ever heard of a game called Flipping Frogs? Our son got it one year for Christmas. It didn't take long before the frogs were being left all over the house and somehow it became a thing between Rob and me to hide the frogs for each other to find. We did this literally for years...we even hid them in suitcases when one of us was going on a trip. I won the game by actually opening a bar of soap, shoving the frog into the box and gluing it shut again so that he would find it the next time we needed a new bar of soap.
Slip a note into his briefcase or a book he's reading. Buy a snack or candy bar that you know he enjoys and put under his pillow. Send him a text telling him that you're making his favorite meal for dinner. Wear an outfit you know he likes. These are just ideas...any and none of which may sound like something your husband would enjoy. Come up with your own ways to be hospitable to him. Maybe what you'll find out is that he doesn't need you to do anything but needs you to be hospitable...welcome his opinion and thoughts. Don't underestimate the power of touch and body language. You might be surprised at how those physical and tangible ways you can be welcoming will strengthen your relationship with him.
Are you familiar with this quote by Martin Luther?
There is no more lovely, friendly, and charming relationship, communion or company than a good marriage.
I think that is a hospitable marriage. It's the kind of marriage that produces the fruit of what he speaks of here:
Sometimes recipes can be complicated, either requiring many ingredients or steps. Other times, however, it's so simple that the recipe is nothing more than a single picture. There should be room for both in your cookbook or recipe box but man, do I love an easy and tasty throw together recipe.
We have people over a lot and food is a central theme to our gatherings. Usually everyone brings something so it's not like the burden to feed everyone falls just on our family. This is nice because it means I have the chance to experiment and
use our friends as guinea pigs try new things.
Saturday was just such an occasion. We made ham and cheese sliders and a yummy dessert that I'll share with you next week. Today, though, I am going to share one of those so-simple-all-you-need-to-see-is-the picture recipes.
Pasta Salad Skewers
What you'll need:
one package tortellini, prepared according to package directions and cooled
bell peppers, chopped
skewers (we used the minis)
What you'll do:
Assemble by placing one of each ingredient on the skewer.
Chill until ready to serve.
Like I said, we used the little mini skewers and they looked really pretty. It's a simple but fancy looking appetizer with a nice flavor. You could also add a pesto dipping sauce too.
It happens a lot. People find out your child is on the spectrum and at some point the conversation turns to all the stories about savants. Savants, generally speaking, are those on the autism spectrum with an unusual gift or skill that is clearly above the norm. A British study found that about 28% of people on the spectrum fit into the savant category.
I wouldn't classify Sam in the group but he has done some nifty things like teaching himself to read when he was three with no help from anyone. Hand your cell phone over to him and he will be doing all kinds of crazy things with it. Actually, anything electronic or gadgety interests him. When he was five I had to make him stop changing my desk top around...he would get on the computer and rearrange, add and hide stuff all the time. He's been making "movies" using the computer for eons. Before puberty became his new bff he could sing on perfect pitch and has always loved music and responded to it. His capacity to remember dates is seemingly infinite.
But drawing and creating has always been his thing. He's always been very artistic combined with a strong storytelling fascination. Over the years he has created these elaborate characters and story lines; sometimes completely from his imagination and other times inspired by something he's read or seen or played with. A personal favorite was Pinocchio Marlin who ran for president and had a sister named Alice. Birdstar Runner was an ode to Homestar Runner. For a while he was creating story boards that told the story of Adam and Eve. These Days Old Timey, The Fouch Kids, SamToons....comics, movies, tv shows, storeis, and apps...you wouldn't believe the things he's created and saved to my computer.
It's also how he learns to process different social situations. This is a drawing he made after he experienced some rude behavior from another boy at a soccer game. (Obviously spelling is not his strong suit :-)
A few months ago he started taking art lessons. He's doing well and really enjoys it. Thankfully his art teacher quickly realized Sam's bent for comic strip type art and has used that to teach some basic elements and rules of drawing. Sam's biggest need is to sloooooooow down and take his time. He has so many ideas going through his head that they all try and come out at once.
Right now he wants to be a cartoonist. I wouldn't be surprised if that happens.
This is one of my favorites ever...we're big book people and story tellers in our house.
Remember how I mentioned that dates stick in his head? Well Sam thinks every holiday should be celebrated and if it's on the calendar then he is bound to mention it. So, you know, happy Boxing Day to all our Canadian friends and what have you.
A few years ago he asked Rob if we were going to celebrate Hanukkah. Rob explained that we weren't Jewish so...no. Sam then asked if we were going to celebrate Kwanzaa. Rob explained that we weren't African American so...no. Sam was pretty quiet for a few minutes and then announced that he was going to create a new Holiday...Kawanzakah...and everybody could celebrate it.
Some of his newer stuff he's done in his art lessons:
"Just you wait!" they say.
Wait until they're teething and keeping you up all night.
Wait until they start to walk and they'll be into everything.
Wait until they get to the terrible two's.
And the big one...just wait until they're a teenager.
Always the words are spoken with a slightly sinister chuckle and a knowing smile...as if there is some secret club of suffering that awaits you and there is nothing you can do about it. From the moment that precious bundle of joy arrives in the world the clear and seemingly only trajectory is one that leads to hard times ahead.
Expectations of rebellion and trouble and general teenage angst are considered the norm and you just have to hope and pray that you did your best and that you'll weather the storm without too much collateral damage. What exactly is your best and when you do it, are of course subject to some nebulous thing that is about as concrete and substantial as the latest parenting trend.
The saddest and most tragic thing to me about the whole "just you wait" mentality is how rampant it is within the church. Believing parents and pagan alike all take a stand on this common ground as if there is no hope. But as a mother of two daughters in various stages of teendom and three other children at different ages and stages behind them, I'm stating without hesitation that Christian parents need to abandon that hill to those who have no Hope and plant the flag of Christ's reign and rule over our children and every moment of their life.
The expectation is and should be that they will love the LORD their God with all their heart and mind and strength. The expectation is and should be that at every age you exhort them to be as Christ like as it is possible for them to be...and that imitation should grow and develop more fully with every year that they live. There should be no concept in the mind of Christian parents that they can do all they can when their children are little but should expect some kind of sabbatical from the faith from about the age of twelve or so until the early twenties.
Child rearing and boundaries should have a funnel like shape. In the early years the boundaries are narrow, and despite a negative sounding connotation, restrictive and confining. We may have to rethink our understanding on these "negatives" though because a train is restricted to the rails and that is not a bad thing. It's a point of fact that it allows the train to fly at amazing speeds and accomplish all that it could not do if it went off the rails so to speak. Fires are wonderful and useful when they are confined to a specific place, destructive and devastating when they are not.
As children grow in their knowledge and understanding the boundaries begin to open up more. By the time they are at the older age of the teen years our children should be at the open ended part of the funnel with lots of freedom and little fear in the hearts of the parents that the young man or woman they've raised cannot handle it. Mind you I am not saying the children are completely free of any restraints or ties to mom and dad but the balance should be shifting to a new relationship between parent and child with the child able to stand sure footed beside the parents.
Of course there are dangers to this way of parenting. If we aren't careful we make it about keeping the rules and doing the right thing without teaching them to love the Rule Giver. It's the difference between a chain linked fence with barbwire at the top compared to a garden with a beautiful living hedge. The Rule Giver is also the Grace Giver and our goal as parents should be to nurture a love in our child's heart for the standard of holiness that we've been given.
So be faithful during those little years. Even when everyone else around you thinks you're being too small minded; remember that you're looking and working toward a bigger picture.
And just you wait. Because the discipline that is hard for you and your child now, will produce the peaceable fruit of righteousness.
Dips. Appetizers. Finger foods.
They're my Waterloo. Heaven help me when sweets or breads come in these nifty little portions. Feta dip is my nemesis. This chocolate chip cookie dough dip knocks my socks off. I was utterly surprised to sort through all my test kitchens and realize that I hadn't posted that one yet. It is seriously one of my go to desserts treats. Do yourself a favor and check it out. Or maybe do yourself a favor and don't...with melted butter and brown sugar it's rather dangerous.
But tonight I may have just ruined apples for myself. Normally I'm not a fruit dip person but when I came across this recipe it sounded good and the creator, Karly from Buns In My Oven, mentioned it was good with nilla wafers or fruit.
I tried it with both wafers and fruit, (don't judge me...it's Mother's Day) but the clear winner for me was the apple with the dip combo. Something about the way the toffee bits and peanut butter mixes with the apple to form a love triangle of epic proportions.
What you'll need:
8 oz cream cheese, softened
1/2 cup peanut butter
1/2 cup powdered sugar
1 tsp vanilla
milk, as needed for consistency
1/2 cup toffee bits
1/4 mini chocolate chips
What you'll do:
Beat cream cheese and peanut butter until combined.
Stir in powdered sugar and vanilla.
Add milk if necessary to thin to desired consistency.
Add in toffee bits and chocolate chip pieces.
We enjoyed it with nilla wafers but like I said the combination of flavors with the apples wins hands down for me. Even my son, who is quite skeptical at trying new foods, went from suspicion to "I am craving the dip" after one bite.
Knowing Sam has been having a very difficult time controlling his tongue lately, I sat beside him on the bed while he put his shoes on to go to his art lesson.
"Hey, Bud, you've been having a hard time lately listening and being qui--"
Cutting me off, "I know I should just stop talking."
"No, Sam I just want you to know you can't do that with Mr. K."
"I never do that to him. I never will. It's just you and Dad."
Smiling a little at his forthrightness, "You shouldn't do it with us either. Why do you do it with Mom and Dad?"
He shrugs, "I don't know. I don't have any idea what I'm doing."
And that about sums up the situation we're currently in with our precious boy, autism, and puberty. None of us have any idea what we're doing. Thankfully Rob, having been a boy going through puberty, knows way more than either Sam or I. Which means he has insight into what his son is feeling and can soothe my anxiety because I am completely clueless. I mean, seriously, I had three sisters and any male cousins I had were older or lived away. I pretty much thought puberty for boys made them stink and grow hair and stuff. Turns out boys are just as hormonal as girls, only instead of tears you get a sort of anger and a need to fight dragons.
Sunday night saw a melt down of epic proportions with Sam, something we haven't seen in a really long time. The last one that I really remember as 'bad' was a few years ago when someone bumped into him and his lemonade spilled. Sam has always freaked out over spills...like crying and babbling and an overall physical reaction. Sunday was not a spill but it was all that plus more. It took hours for him to settle back down.
And this is what I realized. I never forget Sam has autism but I can forget how hard autism can be. It's been a while since I've felt that gut wrenching fear for my son...that somehow this is it and we won't be able to reach any further in to pull him any further out. The fear that this time we won't find the key that unlocks a situation for him...that somehow we've lost that sweet little boy that I love so much.
My husband is much wiser than I and of course much calmer. (Thank you God!) He reminded me that we've been here before and that we've figured it out. And Sam has figured it out. And that it will happen again. So I took a deep breath and grabbed the reins of my run away emotions.
On Monday Sam did ok. His unwillingness to accept an answer that he doesn't like causes some serious mouth trouble...either with babbling or just flat out arguing. It's all wrapped up with silly hand motions and weird mouth contortions. Dinner that night got a little fractious because he wanted to say something that for several reasons we didn't want him to say. There was a brief skirmish as father and son squared off. Father won and the result was Sam needed to eat his dinner in silence. Which he did. For twenty minutes he ate without talking, making strange noises, or flapping his body all over the place. It was a victory because he had found the self control to do what was asked of him.
Later that evening father and son squared off again. This time over a ginormous bowl of popcorn that Sam had made. There was some back talk over being told he couldn't eat it all and when he refused to stop carrying on about it, he wasn't allowed to have any. (This is a major penalty for the boy...popcorn is one of his absolute favorite snacks.) While not as distraught as I had been the night before, my heart was still heavy for him. And I'll admit more than a little bit for myself. I was having visions of the next few years being nothing but one struggle and battle after another and frankly just the thought was exhausting and sad.
You have to understand that with all the stuff that comes along with autism we've got this awesome kid that changes the way we see the world. He can make us laugh like nobody's business and is just generally a joy to be around. The idea that a flood of hormones would possibly wash all that way is very disturbing to me. I think it's what every parent feels as they realize their child is growing up only we have this twist on it because Sam isn't going to grow up like the rest of the world. And we're not really sure what that means. Currently there is very little in place for adults with autism. All the money and effort is put mostly into early intervention and research. I get it. I understand why things work the way they do but it seems a little short sighted to not realize that autistic children will become autistic adults and that they will still have needs. But I guess that is just the next part of our journey with Sam and my husband is completely right...we'll figure it out. And Sam will figure it out too.
He did with the popcorn Monday night. After he was in his room for QT (quiet time) he delivered this telegram to our room.
Dear Mom and Dad,
By the time you read this, I will be playing regretfully. I'm so sorry about what I said. I will no longer eat popcorn so late but will by day.
So my boy may be taller than me already. And he may be starting to stink and grow hair and stuff but that sweetness is still there. And that makes this mamma's heart very very happy.
Despite knowing it was the right thing...that he was the right one...I was as nervous as I had ever been in my life. He stood tall and straight beside my Dad, who would perform the ceremony, and his best man. Telling them he'd be right back, he strode up that small grassy hill, took my cold hands in his and said something like, "Let's go get married." My relief at being fetched worked its way out in a quick kiss on his cheek and together we walked back to the dock.
In that moment that which had been broken was healed. I felt like the last of the dirt and ash of past sin was rinsed away and I was clean...wanted, accepted, and redeemed.
Looking at one of only two pictures I have from that day makes me laugh. We had no idea what all was coming our way. A baby nine months and two days later to make our family of three a family of four. Swiftly followed by another nine months after that and a fourth eighteen months after that. And then of course the utter surprise almost five years later when another one would make our family complete.
There have been times of abundance and some not so abundant. There have been times of good tears and not so good. We've been angry with each other and we've had to apologize and forgive and choose to love all over again.
I had no idea fourteen years ago how much one man could love a woman. The amazing thing though...what leaves me speechless...is that I have no idea how much one man can love a woman in the years ahead.
But I am ever so grateful and delighted to keep walking by his side to find out.
Looking at these family pictures reminds me how much the children have changed (not to mention how much longer my hair is now!) in the last two years...I think we may need to do that again :-)
I feel compelled to share a little bit about Rob's sermon this week on wives since his sermon the week before on husbands prompted this post. And may I be honest and say that wouldn't you know it, the whole week before his sermon I fell behind in just about all my chores and tasks around the house :-) Ridiculous sounding I know but I wonder if any other ministers' wives have experienced the same thing?
Knowing it was coming (so thinking about it) and after hearing his sermon on wives and submission I have a few thoughts that I wanted to share here. It has been my experience that no matter how sweet the place your relationship may be in at the moment we must be ever mindful of the sin that lurks seeking to destroy us and our relationships. Submission, and the lack thereof, is not a dragon that is simply defeated once and all is well. He attacks in subtle and not so subtle ways and we would be wise as wives to know and understand this besetting sin.
And that's really where I want to start. I think for most of us church going God loving believing wives we don't really know what it looks like to be unsubmissive. Probably because we don't really understand what submission itself is but I'll get to that in a moment. Let's work backwards and talk about what unsubmissiveness is and is not.
It's possible that we view an unsubmissive wife as one that argues with her husband on every issue and belittles him in public and has a general lack of respect and disregard for him. I won't argue that this is less than submissive, obviously it is. But it also doesn't go far enough. Because, again as church going God loving believing wives, we probably don't do that. So we tend to think that submission probably really isn't something we struggle with. But Scripture tells us that as a consequence of sin a curse was pronounced on all of womankind and that our desire would be for our husbands. I was a grown woman, married with children before I realized that this didn't mean I would have some kind of frustrated affection for my beloved. It literally means that the desire to master or control the husband is now woven into the fabric of our feminine DNA and is the same phrase that is used in Genesis chapter four when God told Cain that sin was waiting for him at the door and that he must rule over it. So it is my sin. And it is your sin. And we must keep watch so that we can do well and rule over that urge.
So what is submission then? Submission is joyfully placing your husband's decisions, desires, and will above your own. It is preferring him over yourself. It's doing things the way he wants them done even when he isn't around. It's honoring him with your actions, your words, and your thoughts.
It's not enough to do as he asks and wants but speak poorly of those decisions and desires. It's not enough to refrain from speaking against his wishes or wants but to entertain unloving and unlovely thoughts in your mind. Because we're told that what is in us is what comes out of us and what comes out of us is what defiles us. If these three things: actions, words, and thoughts are not kept in harmony than a discordant song will be sung.
Not completely comfortable with my definition of submission? My words are not perfect by any stretch and you may have a better way of saying it. But here is the litmus test for any definition of submission. We are exhorted in Scripture to submit to our husbands as the Church submits to Christ who is her head.
What is the role of the Church? She is to glorify Christ in all that she does. She is to proclaim His way, not her own. She is to abide in His commands, not rebel against them. She is to carry out His work and make His name known among the nations.
This idea will surely upset and enrage some women but a wife, if she is to imitate the relationship of the Church to Christ, is called to glorify her husband. She is to accept her husband's way and make it her own. She is to accept his commands and carry them out and see to it that those around her and in her care sees her faithfully fulfilling his wishes. Everything she does is to ensure his success.
But we don't want to be told that. And heaven forbid that we train up our daughters with that expectation because we're just brainwashing them into accepting a life of abuse.
I can hear some of you now with the buts and what ifs. But what if he abuses that submission and just takes her for granted? What if he just uses it as an excuse to get things the way he likes them with little or no thought to her well being?
It's true. That may happen. It does happen. Some men will neanderthal their way through their marriage. Some men will take their wife for granted. Some men won't lay their lives down for their wife. All men will do this and not do that at some point because all men are sinners. But all women are sinners too and that means sometimes we will seek our own good rather than our husband's.
How many times do you forgive? How many times do you joyfully submit even when he won't hear your counsel? Over and over and over again. And it's not foolish or being a doormat.
It's being Christ like.
*This post and my position on submission in no way advocates or condones abuse by husbands. I believe that Scripture holds women in high regard. I believe that a truly Biblical Christ centered view and application of submission bestows great honor and value upon women. A beautiful and functional pitcher isn't squelched when it is used to offer refreshment instead of being used to dig a hole in the yard.
Cream cheese coffee cake. I'm a sucker for any recipe that calls for cream cheese and even though I'm not a big cake eater I do enjoy a good coffee cake.
I enjoyed the flavor of this cake but it was a bit to stout for me. I really like the thin Entenmann's cream cheese coffee danish and I think I'd enjoy this one more if it was slightly smaller. When I make it again I will probably play around with it and make two separate cakes instead of one.
What you'll need for the cake:
3 cups all purpose flour
1 tsp baking powder
1/2 tsp baking soda
1/2 tsp salt
1/2 cup (1 stick) unsalted butter
1 cup sugar
4 large eggs
1 tsp vanilla
1 cup sour cream
What you'll do:
Mix together the first four ingredients. In a separate bowl cream together butter and sugar. Add eggs one at a time. Add the vanilla. Alternately add in flour mixture and sour cream until combined. Spread half of the mixture into the bottom of a greased 9x13 pan.
You'll add the filling mixture at this point and then add the remaining cake mixture. Swirl with a knife. Add your streusel topping.
Bake for forty minutes or until a tooth pick is inserted and comes out clean.
What you'll need for the filling:
16 oz cream cheese, softened
1/2 cup of sugar
1/2 tsp vanilla
1 large egg
What you'll do:
Mix together all ingredients until smooth and creamy.
What you'll need for the streusel topping:
1/4 cup flour
1/4 cup sugar
3 TBS chilled butter, cut into pieces
What you'll do:
Combine all three ingredients until mixture is crumbly.
It's quite tasty with a cup of coffee and warm from the oven. And quite tasty not so warm from the oven with a glass of milk. Actually just quite tasty. Enjoy!
Autism is a multifaceted disorder. It affects the person in a lot of ways.
Obviously autism affects the way words and situations are processed. You have to remember when having a conversation with an autistic person that odds are there is a lot more being said inside their heads that is left unsaid but the expectation is that if they think it you know it.
But it's not just how they process the words and situations around them. It also affects how they process the world around them as a whole. Their senses are very sensitive. For a lot of children on the spectrum loud sounds and noises are particularly disturbing. The way clothing and other materials feel against their skin can also be a major issue. When Sam was little he would sit and scoop up sand and just let it run through his hands over and over again. He still does it. I've already shared how he would rub his head on the carpet. He was entranced by tactile exploration. You've no idea how far one raw egg can be smeared until a three year old autistic boy is examining it.
The sensory issues show up in a major way with food. He wouldn't eat off a fork or spoon until he was almost three. The sensation of the metal combined with the sensation of the food in his mouth was too much. He wouldn't ice cream until he was four or five for obvious reasons. One week he would peel all the bread off of a corn dog and only eat that part and the following week it was peeled off and pushed aside in favor of the hot dog.
I'm giving you all that back story so that you'll understand that going gluten free was a big step for us. I'm talking huge. Like most kids on the spectrum Sam self regulated his eating to some very specific items. And for those of you out there that think you can out wait an auttie and they'll eat when they're hungry enough...um, no. At least not at first and not when they are toddlers. I'm convinced that an abnormally strong persistence is genetically woven into the DNA of autism and holds all the other traits together.
Of course we assumed that his eating habits where the result of the sensory issues he had until we started reading up on gluten problems connected to autism. Turns out our little fella was a junkie and literally craved the gluten.
Before I go any further I'll put my disclaimer out there. Gluten free works for us and more importantly it works for Sam. I've tried to make it clear in all my posts on autism that what works for one will not necessarily work for another but I do encourage parents to at least consider the affect gluten may be having on your child. You might be surprised. I know we were.
Sam's diet in the beginning of our autism journey consisted mainly of things like french fries, pancakes, and things like chicken nuggets and other foods that had some kind of batter on them. He also liked pretzels and cheerios. The boy loved multi grain cheerios. Are you seeing a pattern here?
Sam doesn't have an allergic reaction to gluten. It doesn't make him sick in the sense that it does with someone who suffers from Celiac disease. For people like Sam gluten actually becomes a drug in their system. Sam's body does not break down gluten, which is a protein natural to wheat. Instead, it forms an opiate that will cross the blood brain barrier and essentially acts as any other opiate does in the human body. Going gluten free can and does cause the person to go through varying amounts of withdrawal the same way a drug addict does. This is why it can be so scary for parents with autistic kids to take this step. It's not easy.
We started reading up on gluten free but knowing what a huge undertaking it was I was a little hesitant. There were tests that could be done to determine whether Sam had the unbroken gluten in his system and we were considering doing it. Instead of spending the money first though my ever so thrifty and slightly skeptical husband decided we should just take a day and not give him any gluten and see what happened. Eight years ago gf foods were not as readily available as they are today. We spent a lot of time and a whole lot of money at a local health food store checking out anything that said gf on it.
The whole day we coaxed Sam into eating gluten free things knowing that in the evening we were going to IHOP and he'd be having pancakes. To say there was a noticeable change is an understatement. Not so much during the day as if suddenly he was making eye contact and carrying on conversations but that night when he ate dinner you could just see him come undone. It was like all the normal autistic characteristics were on steroids. The self stimulations went full speed. We were convinced and didn't feel the need for any further testing. If we could see him spiral out of us while he was eating a pancake then we knew we should give it a go.
We also had the bright idea that the whole family should go gluten free at the same time. We figured it couldn't hurt and according to my research might also help with some skin issues the girls had. Did I mention that usually casein free goes hand in hand with gluten free. That's right, our entire family went wheat and dairy free.
We lasted three months. It wasn't the disgusting mac and chreese (no, that's not a typo...it's what it is actually called) that tasted worse than the cardboard box that it came in that did us in. It was the oh so expensive and horribly tasting hamburger buns that even Rob couldn't choke down that did it.
Thankfully we discovered that casein didn't seem to affect Sam so we were able to go back to normal on that front. Which was wonderful because as one commentator on a support board stated, if evil has a taste it is casein free cheese.
Sam does really really on the gf diet and has always asked before eating anything if it was gf. Gluten free products are much easier to find as stores like Walmart and Publix sell gf items. When Rice Chex went gf Sam put about six boxes of cereal in the buggy before I even knew it. It was a happy day for me when Betty Crocker released their line of gf products and we all did a happy dance when Bisquick started offering a gf baking mix. It can still be tricky and there are times when we have to make special arrangements for his food but it's normal to us now.
As he got older we've pushed him to try different foods. His whole world opened up when he started to eat meat. Because of the other sensory issues we've learned there are certain foods that he just isn't able to eat. Like broccoli. Broccoli is a very busy food. He will eat green beans but prefers fresh ones to cooked. He also enjoys sweet potatoes especially if I'm making the casserole with roasted marshmallows on top. He eats bananas and apples and doesn't really care for many other fruits. He doesn't like the texture of rice or potatoes so most of his meals consist of meat and veggies.
He's real big into tacos. In the last year he moved from just cheese and taco shell to an actual taco with meat. His record is eight at one sitting. He also loves pizza. We had a coupon for Mellow Mushroom and when we learned they had a gf pizza we had to take him. He ate the entire pizza but himself. He makes pizza at home a lot using a gf English muffin that we get at Publix. The funny story for this week you'll just have to trust me on...sometimes when he is making the pizzas he will act as if he's on a cooking show and tells me step by step what he's doing. Doesn't sound really funny does it? Here's the thing though...he does it in this silly voice that is a cross between Julia Child and the Swedish chef off of the muppets :-)
Here is a recipe for some delicious cookies that we can all make and enjoy.
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