Never Give Up!

Never Give Up 2

At school last week, Stevie wrote this Valentine note (pictured above) to me.  It was so very sweet.  I am sure he had someone helping him pay attention to the task and help him come up with ideas of what to write.  I can tell he was partially distracted, at least, because of the messiness of his handwriting. Regardless, I love it!  An "Awwwwww!" escaped my lips when I discovered it in his book-bag.   It the sweetest note, and also true, no matter how much help he required to do it. 

Stevie still loves to bake with me. And he loves to cook. He is still watching Youtube cooking videos, and he is learning what the different foods are for the very first time

He never cared to learn about different foods before, so this is a huge step, and I am finally filled with anticipation of where this may lead.  

He may, for the very first time since he was 2 or 3 years old, try a new food!  

I highly suspect that he will sneak this first taste when I am not looking.  Maybe he already has!  The thought makes my heart beat a bit faster because I had all but given up hope that he would eat a wider variety of food.  I was ok with it on one level, where I know he is safe around the foods he is allergic too. He is allergic to so much that if he were the "family goat",  his life could really be in danger.  

But he is so self-restricting that his sole source of protein is whole milk.  The other handful of foods he eats come from the cracker "food group" and a little from the cereal food group.  Occasionally, he will have applesauce.  And that. is. it.  His health is at stake, I am afraid...if he doesn't enlarge his food selections to include some healthy options.

So, I am excited. Stevie has been paying attention to when I am in the kitchen and start cooking. He will actually get up from his "Little Red Computer" and come to me at the stove or counter top to ask, "Cooking ___?"  He usually fills in the blank with his best guess of what I'm making based on what he's learned online.  

Of course, I offer him something to taste and as always-so-far, he refuses. But he is so curious and interested in cooking and baking, that I really think the day is coming, when he will try something that he makes.

Try something, besides the disgusting concoction he made in the bowl after the bread dough was removed, with juice, milk, cereal from the table and the left-over yeast-flour mix in the bowl. It looked...terrible and by the expression on his face and his attempts at getting the taste off his tongue, it tasted terrible as well!

So I am here today to tell you,  "Never give up!"  Never say never, for you really don't know what surprises lie around the bend. 

*I once didn't believe Sage would ever be able to go to a summer camp without a support staff with him.  And he successfully did it!

*I once didn't believe Stevie would ever climb on a jungle gym, and he did it!

*I once doubted that Sage would learn talk, and now he's a pro!

*I once didn't think Stevie would eat new foods... and now I believe he will one day.

At his own pace, in his own time, and in God's perfect timing for him (and us). 

"Love never gives up, never loses faith, is always hopeful, and endures through every circumstance."  

1 Corinthians 13:7

What things have you given up on believing will ever come to pass?  I would love to hear from you so leave your comments in the box below!

Autism And Discipline: Why I Don’t Spank

Autism And Discipline

This may be the most controversial post I've written. Never the less,  this is our story....

I recently posted a question on Facebook asking for ideas on how to get Stevie to stop throwing things down the stairs.  Amidst several creative, problem solving ideas, were some more traditional suggestions that I "just spank him". After all, it is a direct disobedience of the rules, right?

So, let me just "go there" for a minute.

The assumption is that spanking works, and that it is a reasonable punishment for direct disobedience.

While that may be true (although not publicly acceptable anymore)  for some typically developing kids, it is not true for all kids, especially those on the spectrum.

For any punishment to work, there are 3 things that must be understood by the child, according to Bill Nason, MS, LLP:  They must know that what they did was wrong, they must know what to do that is right in that situation, and they chose the wrong thing (which assumes they were able to choose the right thing, but didn't.).

Now that seems like a nice, neat formula for whether you should punish or not, but nothing is straight forward with autism. When you add the confounding factors of sensory disorders, language barriers, cognitive abilities and medical issues, it isn't so neat and tidy any more.

Here are a few examples of stories from our journey:

Let's flash back to the year 2005, when my twins were 2 1/2 years old, and we did not yet know that Sage has autism.  We had just put the twins upstairs in their toddler beds, and were trying to get them to sleep in them. Hope did so happily, loving the idea of a big-girl bed. But Sage? Not so much. He wanted to sleep in his pack-n-play, which he had recently destroyed and was no longer an option.  So to the bed we required.

He wouldn't stay.

No matter what we did.

Friends said to be more consistent, and he would figure it out.  Not.

Friends said to spank him every time he gets out of bed. Didn't work. He'd look up and laugh, and then run to bed so he could get right back up again and have the scenario repeat. He thought it was a game.

Nothing anyone told us would "work". The child would not sleep.

Completely flabbergasted, I called Focus on the Family and set up a time to talk to them about what to do. The counselor was great (especially considering I mistakenly thought of them as "the spanking people") and advised that if spanking doesn't work, then don't do it.  She said that not all kids respond to spanking as a discipline and to find other ways. She suggested we pray about him and what to do, and she sent us some books to read in the mail.

Looking back, I know she suspected SOMETHING was up with Sage, the one who couldn't talk except to say numbers, letters and colors. The one who repeated his steps over and over.  But, she didn't know it was autism. We wouldn't figure that out for a little while longer.

So, we started sticker charts and positive reinforcement. Didn't work. Now we know that he couldn't connect the dots between an action and it's consequence (good or bad).

I honestly don't remember all the things we DID try, but we pretty much tried everything we found to try.

And then I went to the bookstore and decided to find a book on toddlers and behavior. The first book I opened, described Sage to a T:  doesn't like to color, doesn't play with other kids, doesn't point, delayed speech, great with puzzles, doesn't eat snack with a group, etc.  That kid had autism.

And then, we knew: Sage has autism.

We spied on him at church to verify our suspicions.  We knew what to look for, and we saw it.

And we found out after reading THAT literature, that kids with autism are KNOWN to not produce enough naturally occurring melatonin and therefore have a hard time falling asleep, or staying asleep.

It turns out that what looked like a direct disobedience (not going to bed) was instead a medical problem--he just didn't have the language skills to tell us that he couldn't sleep.  

Once he was given Melatonin, he fell asleep within 30-45 minutes!  He had been staying awake until 2am running himself until he literally collapsed.

Another time when we thought Sage was being "stubborn" and just refusing to do what we asked, it turned out he had no idea what we were asking of him.  We used to tell the twins to put their shoes in the shoe basket, and Hope would trot over happily and put them away. Sage would go off and do his own thing. He would only do it if we took him over and made him do it.

It was the same way with spilling cheerios.  We would tell him to clean them up. He'd ignore us. It was infuriating because we did not know he did not understand the English language. If we took him by the hand and had him pick up the cheerio and put it in the bowl, he would complete the task 100% with no problem.

What looked like direct disobedience, was actually a lack of understanding what we wanted him to do.  Punishment will not help that.

Even at age 8, he didn't get it.  I remember one day he was doing something he was asked not to do, over and over again. I can't remember what it was exactly, but basically he was told if he did it, he'd have to go to his room. He'd do it, and be sent to his room. Over and over this happened until like the 6th time he came downstairs, did it again, and was told to go to his room and he says, exasperated, "Why do you keep sending me to my room!"

He didn't get it!  I would have sworn he understood but he he did not.  No spanking would teach him that.

When Stevie was 3 years old, he had already greatly restricted his diet. We had found out he was allergic to eggs and dust, and so we were trying to enhance his diet and offer him foods he could eat and see if he'd try it.  Some people gave us advice to offer him food and when he is hungry, he will eat it.  Not true for Stevie, he'd rather starve himself.  

Anyway, I remember one terrible experience with an OT we had coming to our house. She was trying to "make" Stevie eat peanut butter (a food he used to love but then refused to eat) by giving him a cracker (that he loved) and then telling him if he wants another cracker, he has to taste the cracker with peanut butter on it first. (For those of you who know how much we dislike ABA therapy, this is one of the reasons why!).  So of course, Stevie refused to eat the cracker with peanut butter and the OT did not give him any more crackers, so he threw a massive temper tantrum that lasted hours.  (We ended up refusing to let that OT back in the house!) Then a while later, I made Stevie some toast with peanut butter on it, and offered it to him. He gave me the most pitiful "no" and he almost looked like he may vomit if I didn't move it quickly. Like even the smell was making him queasy.

It turns out, that Stevie had developed an allergy to peanuts and tree nuts. No amount of punishment would make him eat it. Eating it was a worse punishment than anything external that could be inflicted upon him. He didn't (and still doesn't) have the ability to tell me the peanut butter makes him sick.  He could not tell me that food made him feel bad.

I cannot tell you how badly I felt for trying to help Stevie eat more foods, just to find out he was allergic to them and could not tell me that.  What looked like stubbornness at worst, or sensory difficulties at best, turned out to be self-preservation.  He now carries an epi-pen everywhere he goes.

All this to say: we don't always know what is really going on.  The child that hits and kicks and jumps and stomps may feel completely unattached to his body because of his sense of proprioception being under active.  Instead of punishment, this child needs some Sensory Integration OT to give him the input his body craves in a safe way.  The child that spins and runs and bolts off and runs on top of the furniture instead of on the floor may need some OT targeting the vestibular sense.  The one that processes motion.  

We won't know what the true problem is, if we just demand immediate compliance, and discipline and punish instead of taking the time to listen (and research) to what the childs behavior is telling us. It isn't always easy to determine, and sometimes we may never know.

Yesterday morning (the morning after I posted my question on facebook), when Stevie got up from bed he looked like this: 


photo 1 photo 2

How might you behave if you itched insanely and couldn't escape your own skin?

*I do want to make it clear though that we are not anti-discipline!  Not at all. We do discipline our children and teach them what is the right way to behave.  Sometimes it is more straight forward than others. We do used calm-down times (or "breaks") to decompress and for safety of everyone, and time-outs for bad behavior. We use reward charts and positive reinforcement and social stories--lots of social stories--to teach the boys and help them understand what we are saying, in their language!*