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Everything Works

I'm reading a book that justifies my theory that "everything works when you work for it" with Autism. It's called Overcoming Autism written by the cofounder of the Autism Research Center at the University of California at Santa Barbara.

She says:

"everything you do will make a difference. There's a lot you can do for your child, more than you may be aware of right now . . . There are no miracles. It would be nice if a nonverbal kid suddenly started talking in sentences, if a self-injurious kid suddenly decided he preferred playing the piano to hitting himself in the head, and if a withdrawn boy suddenly realized that it's fun to play with other kids. Of course, none of that's going to happen.

"The good news, though, is that if you remove "suddenly" from the previous paragraph, it's a completely different story, because we have seen all these things happen. They just didn't happen suddenly or out of the blue - they were the result of hard work."

Now that we've been combining a variety of approaches to Holden, it seems like he's making a lot of progress. Everyone from his teachers to his therapists are really encouraged by the amount of progression he's exhibiting. His task persistence is still low, but it's getting better. His language and sentence structure is getting more complex, he is jabbering less. His temper tantrums are shorter and I'm getting better and figuring out why they're happening and helping him avoid them. And he's interacting socially far more than I've ever seen.

So here's what we're trying right now (in addition to Speech Therapy, Occupational Therapy, GF/GAPS diet, and my in-home ABA sessions.

Drum Therapy



We listen to Shamanic drumming music every morning and dinner time. Those two times are the typically the hardest times of the day for Holds. Our OT recommended we get drumming music because it's beat is similar to the beat of a heart. And it helps kids with Autism regulate their nervous system. It helps calm them down. We listen to it in the morning as we show him his schedule, make breakfast and get dressed. And then either at dinner time or before bedtime, he likes to hear it again. Drum therapy just basically reduced stress and tension - which is good for all of us.

Picture Schedules



I bought a laminating machine a couple weeks ago and have been a laminating queen. I searched Mr. Google for all the activities and places and things we do throughout the day to help Holden know what his day looks like. He used to have meltdowns every day when I'd try to explain where we were going. People with autism have a hard time with concepts they can't see. This has cut down on tantrums SIGNIFICANTLY. He does so much better when he can see what's coming.

He's such a literal kid that the first time I used our lunch picture, he saw what his actual lunch was and said "no, want this lunch" - it took a few times before he started accepting these were symbolic and the reality doesn't have to be exact. :)

Essential Oils



I never thought I would use essential oils, but I sort of love them right now. I only have a few. We use Cedarwood and Lavender mostly. Lavender is calming and soothing to the nervous system, but also an antisceptic, anti-inflammatory, and bunch of other things, which is why they call it the Mother of all Oils. We put lavender on Holden's pillowcase and rub it on his feet at night or any time I can calm him.



I used Cedarwood on the back of his head on the top of his spine. It's supposed to help open up his limbic system and help his concentration and focus.

Cell Phone Timer



Several therapists recommend a timer for behavior problems. 90% of Holden's tantrums are around transitions. He has a hard time, even with a picture schedule, transitioning from one activity/place to another. I used to count, give him warnings, say he has 5 minutes left, etc. but this method has been the most effective. I tell him how many minutes he can play for, then show him the timer and let him push the start button. So far, it's the best thing ever. I just need to remember to use it!

Holden and his Giant Memory

Like many autistic kids, Holden has a knack of reciting lines from movies and songs. I got a book at the library our SLP recommended called "Polar Bear Polar Bear, What do you Hear?" and it had an audio CD with it. After the first time he listened to it, Holden started reciting it back to me.

He loves reciting it to anybody who will listen. And he even does the part of the book where the narrator says: "want to read along? When you hear this sound (ding) please turn the page." And then starts all the way over. But he's very tired here so he just does it once. But still, it's cute.



He has started to generalize this with other animals and will ask them what they hear (Eg "Dinosaur, dinosaur, what do you here?") and then make up sounds for them, which is very encouraging. In fact, his imagination has been improving a lot. In the pool the other day he said he was a crocodile. Every time he does pretend play it's like a little ray of hope and sunshine.

Our Autism Diet: GAPS and Gluten Free

You might think I eat, breathe and drink autism, based on my posts. I asked Wes if he thinks people will think we're obsessed. He says this blog is a great way to document what's going on and that it is really beneficial for us. Even if nobody else reads it.

I keep getting asked how our GAPS diet is going. Well the truth is, I jumped off the full GAPS wagon weeks ago. And I've been trying to find myself ever since. I left because I lost too much weight on the diet and lost my milk. Fitz was crying every time I nursed and I didn't realize why until I pumped and created next to nothing! So my dear friend told me to go get a shake. Which I did.

So here's what we're doing. We are on a mostly Modified GAPS/Gluten Free/Whole Foods diet. I hate the word diet - it drives me to overdose on Snickers and cookies. There needs to be another word.

The GAPS diet has been amazing for what it is taught us. I like it so much better than the "Autism Diet" which is Gluten Free/Casein Free. Commercially-made gluten free foods are jam packed with starches and weird ingredients like xantham gum and disaccharides. Even homemade ingredients have a lot of sugar and starches. How can that be better than wheat and spelt? And I get that some people really do have allergies to gluten (Celiac disease) but Holden (unlike most autistic people, apparently) has never had any digestive issues. So it's hard to know if he really needs the GAPS diet or even the GFCF diet. Whereas the GAPS diet is amazingly healthful: no sugar, just meat, veggies, fruits, honey, and homemade dairy products.

But sometimes I just need some darn grains. And dessert!

So anyway, here's where we're at: we eat mostly GAPS foods - eggs, meat, vegetables, nuts and nut butter, fruit, honey, and yogurt (I can't figure out lacto-fermented vegetables). Occasionally we eat gluten-free foods/desserts like chicken nuggets, chocolate flourless cake, and pasta. And super duper rarely we might eat sourdough wheat bread, that I have yet to make but keep thinking about.



Here are foods that Holden eats eagerly:
Banana pancakes
Butternut pancakes
Nut butter bread
Sunbutter
Honey
Chicken
Hamburgers (bunless)
Scrambled eggs
Carrots
Juice
Grapes
Raisins
Raspberries
Strawberries
Sausage
Bacon
Zucchini bread (GAPS)
Apples
Frozen Yogurt

Foods he eats with some persuasion
Cooked carrots
Zucchini
Squash
Bananas
Green Smoothies
Lettuce
Pot Roast
Pork
Salmon

Foods he still will not touch
Potatoes
Broth
Cabbage
Applesauce
Yogurt

Echolalia and Speech Therapy

I had this "aha" moment the other day when I was reading more about echolalia. Echolalia is when a person echoes a word or sentence that someone (or even something like a TV) speaks. For a really good paper on it, go here.

Many high-functioning autistic adults say that nouns and verbs make sense to them because they can picture what that is. Literally they see a picture of "jumping" and know what someone is talking about. But filler words have no meaning. Words and concepts like "Will, faith, To Be, etc" have no concrete visuals to assign to it and therefore are much more difficult to process.

After reading that if FINALLY made sense why H. can't say YES! The word yes has absolutely no meaning for him. He doesn't say it because it has not value to him. When I ask him "Do you want carrots?" he looks at me and says "carrots." No matter how hard we work on having him answer yes, it is the noun or the verb that describes what he wants that he answers with. When he was little(er) he would come bring his toys to us and say their name, like "Woody!" We would answer "yea" or nod our heads. And it was like this response wasn't good enough - he would just stand there and say "Woody! Woody. Woody" until we responded with "Woody." He was looking for confirmation that he was naming something correctly and that he got it right and us nodding or saying "yea" had absolutely no weight because it doesn't mean anything to him. He wanted us to say the name of what it is.

Now that I grasp this, it makes it much easier to see if from his perspective. It would be like going up to someone in a foreign land saying "Is this a bathroom?" and having them respond "QPDRUVG." We would just sit there and say, "so is that a yes or a no - is this a bathroom? Bathroom?" Until they responded in a way we could understand, hopefully with an affirmative "bathroom."

Getting H. to assign a value to the word Yes is one of the things we are working with a Speech Pathologist on. It is super unnatural for him so we're working hard on it. He's actually pretty good at "no" for the most part so it's just transitioning him away from repeating the noun or verb that he is favoring and does want for the word yes.

Most people who see H. in public don't know he's autistic. He's high-functioning, imitates other kids, plays with other kids (for the most part), and is super friendly. He's a happy kid and other kids seem to like him (thankfully). It is when you try to have a conversation with him that something clicks and you're like "ok there's something different here."

Here's are some definitions of echolalia and examples from our home:

DEFINITION
Echolalia is reflective of how the child processes information. The child with autism processes information as a whole "chunk" without processing the individual words that comprise the utterance. In processing these unanalyzed "chunks" of verbal information, many children with autism also process part of the context in which these words were stated, including sensory and emotional details. Some common element from this original situation is then triggered in the current situation which elicits the child's echolalic utterance.

EXAMPLE
Me: "Do you like Buzz Lightyear?"
H: "Buzz Lightyear, the coolest toy ever! He shoots lasers..." etc (I don't remember the whole line, but it's from Toy Story 3)

DEFINITION
Conversational turn taking: The child recognizes when he is to take a conversational turn and that some sort of response is required. However, the child lacks the spontaneous generative language to engage in the conversation, so he relies upon an echolalic utterance to take his "turn" in the conversation.

EXAMPLE:
Me: "H. how was school today?"
H: "Learn 'bout numbers and letters."

DEFINITION
Initiation of communicative interactions: The child is beginning to recognize and notice others. Because he lacks the spontaneous generative language skills to initiate a communicative interaction with someone, he uses an echolalic utterance.

EXAMPLE
Friend: I'm xxxx, and I'm 3
H.: "Hi, my name is H. about spring is flowers" (in school he memorized a line to say when they held up his name. Now we can't get him to stop repeating the entire line - which is missing "my favorite thing"...before the spring part.

DEFINITION
Utterances that may be used as self-direction for his own actions.

EXAMPLE
He self-talks all the time to help get through tough situations.
Me: "It's time for bed"
H: "Park! Park! Park!"
Me: "No right now it's time for bed."

Later.....
H: "It's time to jump in bed." or "You can go to the park after you take a nap"

DEFINITION
Indicating affirmation in response to a previous utterance

EXAMPLE
Me: "Did you have a nice nap?"
H: "Did you have a nice nap?"

DEFINITION
Requesting: The child uses echolalia to request a desired object, action or event.

EXAMPLE
Teacher: "Do you want ranch with your broccoli?"
H: "Do you want ranch with your broccoli?"

The great thing about echolalia is that is can be a really positive sign because if he can echo he can talk. And at least he has language. The key is turning that language into conversations that make sense to both the utterer and the receiver. H. loves his SLP and is so good about going, playing, talking, and cleaning up at the end. He's really getting the hang of it! And we learn how to help him better. It's been really good.

Sensory Integration Dysfunction and Heavy Lifting

I took Holds to get evaluated by an Occupational Therapist this week. My fabulous friend Stacey recommended I take him to an OT to get a "sensory diet" for him. Holden has always been sensitive to sound. He covers his ears and gets really anxious around loud noises or anything he thinks is scary. And he gets easily over-stimulated around a lot of people. He does a good job of dealing with that, though - in my opinion. Instead of throwing a huge tantrum like a lot of autistic children, he just goes off in a corner or away from the crowd to give himself a time-out.

Anyway, so I really liked the OT. She was good at earning his trust and teaching me what she was doing at the same time. She uses the Jean Ayres method from what I understand, which is to incorporate deep pressure and slow vestibular stimulation done on a swing - while encouraging speech and social interaction (but making it fun). The theory here is that autistic kids (and other kids with sensory integration problems) have nervous systems that don't give them correct information. So they're in a state of fight or fright over any little thing because they're nervous system isn't telling them "hey, this isn't that big of a deal - this is not a threat."

In "Thinking in Pictures," Temple Grandin talks about sensory processing for herself and many autistic people she's interviewed. It's fascinating. So many people thing autism is merely a psychological disorder, but there are usually biological reasons for why they do what they do. For example, she says "When two people are talking at once, it is difficult for me to screen out one voice and listen to the other. My ears are like microphones picking up all sounds with equal intensity. In a noisy place I can't understand speech, because I cannot screen out the background noise. When I was a child, large noisy gatherings of relatives were overwhelming, and I would just lose control and throw temper tantrums."

And then she says "Overly sensitive skin can also be a big problem. Shampooing actually hurt my scalp. It was as if the fingers rubbing my head had sewing thimbles on them. Scratchy petticoats were like sandpaper scraping away at raw nerve endings. In fact I couldn't tolerate changes in clothing altogether. When I got accustomed to pants, I could not bear the feeling of bare legs when I wore a skirt...Most people adapt in several minutes, but it still takes me at least two weeks to adapt."

Holden doesn't have (from what I can tell) visual problems and he looks people in the eyes when he really wants something, but this is also really interesting: "Fluorescent lighting causes severe problems for many autistic people, because they can see a sixty-cycle flicker. For Donna Williams reflections bounced off everything, and the room looked like an animated cartoon. . . . Distorted visual images may possibly explain why some children with autism favor peripheral vision. They may receive more reliable information when they look out of the corners of their eyes."

It is SO interesting how many kids (not with autism) have sensory issues. It's great that Occupational Therapy and sensory diets can help sensory mixing and calm down heightened senses.

Our OT recommended we do deep pressure hug therapy with Holds throughout the day. Some autistic kids HATE being touched, but we're lucky with Holden. He'll let us touch him and loves hugging baby Fitz. But with others it's usually a no-go. In fact, he said "ouch that hurts me!" when this one therapist at the school district touched his arm.

She also instructed us to encourage him to do Heavy Lifting every hour. She explained that it's just like how I feel after a good workout where I've really used my muscles. Heavy Lifting sends a wave of calm to the nervous system and over time it should even Holden out so he feels more relaxed and less anxious and scared.

We got right to it! He's been carrying groceries, lifting up his toys to put them away, climbing, playing at the playgrounds, running, lifting actual weights, and anything else we can come up with.

The Stuff I'm Figuring Out

I wish I had known about Holden's autism earlier. Not so much for early intervention, but just so I could have been a more understanding parent. I'm sure most parents feel like they don't know what's going on with their kid, but for me it was one of the most pervasive feelings. It explains a lot of things:

It explains why he didn't like to be held as a baby and would cry when I tried to hold him in my sling or stiffen up when I tried to put lotion on him. He was his most content happy self when he was sitting alone in his chair.

It explains why me taking him to San Antonio when he was 18 months old was such a torturous trip (for us both). I just couldn't understand why he didn't connect with my family at all. Or why he was so frazzled the whole time. It makes sense now. Change is just excruciatingly hard for him.

It explains the hour-long scream fests in the middle of the night when he was utterly inconsolable. And why his frustration levels go from 0-60 in a 1/2 second.

It explains why he was the only kid at play-dates that would come unglued at the end of them. I seriously just stopped going to them because Holden couldn't leave without an enormous tantrum. At least one of us left in tears every time we went anywhere. I just seriously stopped taking him places by myself. I was afraid to. Transitions were just impossible.

And it makes it totally understandable why he HATES the Lehi Legacy center pool when the big bucket and bell goes off every 10 minutes and splashes water. The noise and the commotion are complete agony to his hyper-sensitive senses.

I speak in past-tense because now that I know more about ASD I am becoming a much better parent. Understanding Holden has brought so much clarity into our lives. I used to be so embarrassed when Holden would tell someone who just came to our house to leave. Actually, he didn't understand leave so he would say "STAY HERE! STAY HERE!" meaning "go away" and people probably thought he was so rude and we were rude for having a rude boy. But now we just try to prepare him for when people (we know of) come to the house and he handles it fine (usually). I'm reading Thinking In Pictures
right now and am learning so much. Temple Grandin is amazing.

Holden is such a bright, beautiful boy. I love him so much and am thankful to be ever-learning more about him and how to be a better mom to him. It has taken me a while to get here, but I'm ok with him being autistic. At first I was shocked, then angry, then really sad. But I am ok with now. I don't want to train the autism out of him. I absolutely adore that boy and I believe he - like me and everyone else - has a purpose here and it's my job to help him fulfill his mission. It's just my job to see that he gets all the resources and help he needs to be as healthy, happy and high-functioning in this crazy world as possible. And I'm learning a lot on the way.