Sunday, October 25, 2009

Reading List

One of the first things I did after we got ZL's diagnosis was head to Barnes & Noble. We had about five days between when we had our final consultation and when we left the US to return overseas, so I wanted to leave "armed." I wanted to take several key books with us to help us navigate the months to come.

How did I determine which were "key" books? Well, I sat down in front of the "autism" section of the shelves, pulled off a stack of about 25 books that looked helpful/interesting and took them to the little picnic table in the children's area (I had the three older children with me, and they were reading there). I thumbed through each book and made three stacks: "definitely," "maybe" and "definitely not." Then, I went through the "maybe" books and narrowed those down. I left with 6-8 books, covering the gamut from personal stories to clinical treaties on biomedical treatment, and everything in between.

Have they all been useful? Meh. Some definitely so. Some not so much. And it turns out that, as I've looked up the books to link them for this post, probably 75% of them are now (or have been this whole time; not sure which) available as e-books. Could have saved myself some luggage space. Oh well. Hindsight's 20/20, and, at that point, I desperately needed to do something, so this helped with that need.

Here are the books that we have/have read/are planning to read.

- Louder Than Words: Jenny McCarthy* has been catapulted to spokesperson status for the movement to heal and prevent autism, primarily by her celebrity status (she's some sort of MTV star, for those who don't know who she is, just like I didn't when I stumbled upon her book). She feels like she is to use that status to get the word out about healing measures and to push for prevention where possible.

A summary: she watched her own son descend into autism due to a set of seizures and some possible links to vaccines and medications. She then committed herself to the process of seeing him healed and achieved just that.

McCarthy's book is both simplistic and crude, but wait for my reasons why I'd still recommend it. Simplistic, because she is telling her own story. She's not exploring the exponential causes and cures and preventative measures related to autism, just the ones that relate to her own son. Crude, in that she cusses, plain and simple.

The simplicity, though, is just the thing that drew me to this book (and her others). I was completely and totally overwhelmed with not only Z's diagnosis but life in general when I started searching for resources. This book was do-able. It was an easy read. It gave me hope (not the only hope I had, but hope). And it gave me tangible things I could immediately implement, primarily the gluten-free, casein-free diet.

Quite frankly, the crudeness, too, was refreshing. She uses words that I wouldn't, but she expressed my feelings pretty well. It was helpful to have the unfairness and frustration spelled out on the page for me. Not that I stayed at that point (nor did she), but it was a definite stage of the grieving process. Which is why, if you can handle the language, I still recommend this as a resource.

If you can, I'd check this one out of the library, though, because it's probably not one you're going to refer back to, at least not much.

- Mother Warriors: McCarthy's second book compiles stories of parents, like herself, who have fought to free their children from autism. Again, this is an easy read. Less cussing, so it might be a better book to read, if you'd prefer to avoid that, although the occasional word slips in. And, again, this is a great intro-to-healing-autism resource. It covers many, if not most, of the possible biomedical interventions as well as the traditional therapy approaches.

I find that, in whatever area of life I need to grow in (homeschooling, grief, marriage, etc.), I learn better from reading other people's stories, rather than theory. I glean what applies to me by picking and choosing what has worked for other people. This book provides a similar opportunity.

- Play to Talk: I actually ordered and started reading this book before Z's diagnosis, because his primary issue is language delay, and this book was recommended to me on the Sonlight Learning Challenges board as applicable to all language delay and written to be used by parents in the home. Kinda like it was written just for our family.

The basic theory (obviously, over-simplified) is to start where your child is, whether that be gestures, grunts, one-word phrases or whatever, and add just one step. When they follow by going that one step, you move one further. And all of this is done during play.

Since Z was at one-word phrases at that point, this meant a major shift in my interaction with him. From the time my brother was born when I was five years old, I've had it ingrained in my mind that you don't baby-talk to babies or children. It just wasn't allowed. No cutesy talk. You speak to a child/baby as you would speak to anyone else, and he/she will learn to speak properly. It worked for my brother (to put it mildly [he's a professional sports broadcaster :-) ]), and it's worked for our older three children.

What implementing Dr. MacDonald's theory meant was that I had to abandon this method. When Zachariah said, "cookie," I had to reply with, "want cookie," rather than, "Oh, you'd like a cookie? Sure, I'd be happy to get one for you," or "Say, 'I want a cookie, please, Mommy." We were going to have to be a lot more purposeful about building language, because it just wasn't happening naturally.

In spite of the fact that I haven't ever finished the book (it's a high priority this week), we've mostly been implementing this theory with Z since sometime in May. And I really feel like it's paid off. He's making leaps and bounds in his language process, and I think it's partly because we've broken it down into more simple pieces for him.

Suffice it to say, I highly recommend this book for use with language-delayed kids at home.

- Healing and Preventing Autism (I'm linking to the Kindle version, as that is the one I have read): McCarthy's third book, written along with Jerry Kartzinel, her son's DAN doctor. DAN (Defeat Autism Now) doctors are a loosely affiliated group of doctors adhering to a particular protocol of recommended tests and biomedical treatments for autism. Many have personal experience with family members with autism, which has led them to think outside the standard autism-is-not-preventable-nor-is-it-treatable box.

The style of the book is rather hokey and conversational, but it is also an easy read with even more information than the previous books. Kartzinel talks through the possible causes and biomedical treatments for autism with very specific information about each. We have referenced this book several times when deciding about tests to run and even potential dosages (methylB12, although we have not implemented this yet) for ZL. The digital format makes it a little difficult to reference, so it might be better to purchase a hard copy or check it out from the library (although this might be partially due to the fact that I'm viewing the book in Stanza on my iPhone, as opposed to actually on a Kindle or even in the Kindle app, which drains my phone credit).

- Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies (I am also reading this book electronically via Stanza on my iPhone, but it was purchased through Barnes & Noble): Written by another DAN doctor, Kenneth Bock, this book promotes his (compelling) theory that the "Four A's" (listed in the title) are a related epidemic caused by toxins in the environment (including vaccines), poor nutrition and overuse of drugs like antibiotics. Bock intersperses technical information and theory with patient stories.

A more enjoyable read than Healing and Preventing, as it is better written, and similarly helpful for the technical information. However, be prepared for a healthy dose of ego. I can only imagine the praise heaped on Bock by parents who's children he has helped heal. He, apparently, has bought into at least a bit of his own press, and it shows (not on an over-done scale, but it's noticeable). That, though, does not interfere with this usefulness of the books, so I would still recommend it as a "step up" from the McCarthy books but still readable.

- Getting the Best for Your Child with Autism: I bought this book as a general overview of autism and its mainstream treatments (so, therapy, basically). It is definitely that. The first third or so of the book walks you through the diagnosis process, and the second two-thirds help you go about getting treatment.

I thought that, even though we did not have access to most of the standard treatments, being overseas, and might not avail ourselves of them, even if we did, being homeschoolers and seeing the value of day-in, day-out application of therapy principles, I could still get some use out of this book and its descriptions of the various schools of thought.

Hm, not so much. Granted, I haven't finished it, but it hasn't really told me much other than what I'd already gleaned from the other books I'd read, and it spends a lot of time laying out the best ways to interact with doctors, therapists and school personnel, with whom we don't interact, for the most part.

That said, it might be just the book for navigating the system it was intended to help navigate, so don't write it off, if that's the process you're going through. Just didn't do much for us, in our situation.

And, now, for the books we should be reading. I'll admit, these two are important books. We need to have finished them months ago. Instead, one I've barely cracked and the other not at all. We're getting there.
- Engaging Autism: A "classic" autism therapy book outlining the principles of the "Floortime Approach" by the initiator of the approach, Stanley Greenspan. This is the one I've cracked. Can't really give a review of it. But it looks good and useful and was recommended by our evaluator.

- Changing the Course of Autism: While this is the book we perhaps most needed, since we're navigating much of ZL's treatment ourselves, it has, I'll confess, been the most intimidating. It's not even that clinical. It's just that there's always been another, easier book to read in my time I've devoted to reading. It gives a history of autism, explores its causes, and outlines the major potential biomedical treatments. It's next on my list. I'll let you know.

A bonus book:
- Different Like Me: On my search through the stacks at Barnes & Noble, I came across this book, which is a compilation of brief biographies of famous people thought to have had autism. I bought it not for ZL, although it was intended for children with autism themselves, but for his siblings. I wanted a gentle way to introduce the concept to them. They've enjoyed reading it, as have others (adults) who have visited our home. Honestly, I hope that, by the time ZL can read this book, his autism diagnosis will be a thing of the past.

On our to-buy list:
- Children With Starving Brains: A look specifically at the nutritional aspect of healing autism, which we are particularly interested in, since ZL has obvious digestive issues and has recently been shown to have deficiencies in specific, odd amino acids. Again, I'll be back with a review of this one, once we either locate it electronically or have it brought over.

That's all.

*After her appearance on Oprah, where she told of her son's healing from autism, McCarthy's claims were "debunked" on a news program or two by those supporting the theory that autism is not curable. I won't go into the technicalities in this post, but I feel like those posits, in turn, could use to be debunked, or, perhaps more accurately, deconstructed. Maybe I'll get around to that some day.

Tuesday, October 20, 2009

One More

One more recent phrase. I knew there was another one, but I couldn't remember it when I posted earlier.

- "It's broken. It won't work." ZL has a recently-developed fascination with super-heroes. (This is partly due to the plethora of hand-me-down super hero pajamas he has from when we were living in the US when MS was this age. Oh, the money we save by Mommy not being able to wander through Wal Mart and Target on a regular basis.)

We're still in the process of unpacking boxes and a cheap Spider-man surfaced that ZL latched on to and began playing with. It, being cheap, broke quickly. My general policy in these situation is to say, "Oh no, it broke. Guess we have to throw it away," all the while secretly glad that it's another piece of stuff we can get rid of.

While I didn't say this out loud to ZL, when he came to me and said, "It broke," because I wasn't sure he would grasp the whole meaning, I didn't have any intention of fixing it. Not worth it. However, when "It broke," developed into, "It's broken. It won't work,"* I caved. I fixed it (Spider-man's leg pin [apparently, Spider-man was injured in 'Nam] had come out). What mom of a kid on the spectrum can turn down two sentences in a row? Not this one.

*These sentences are thanks to the recent episode of Blue's Clues, "The One in Which Blue Gets Frustrated," that Mommy chose for his viewing pleasure. Okay, so that's not the title, but we've been on a Monk-viewing streak lately, so indulge me.

Healing Scriptures

In a similar vein to the Healing Playlist, I have Scriptures related to healing that I've been meditating on and praying over ZL. They increase my faith and, I hope, the effectiveness of my prayers.

- Praise the Lord, O my soul, and forget not all of His benefits, who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's. Psalm 103:2-5

- And all the people were trying to touch Him, for power was coming from Him and healing them all. Luke 6:19

- I, the Lord, am your healer. Exodus 15:26d

- Trust in the Lord with all your heart and do not lean on your own understanding. In all your ways acknowledge Him, and He will make your paths straight. Do not be wise in your own eyes; fear the Lord and tun away from evil. It will be healing to your body and refreshment to your bones. Proverbs 3:5-8

- But for you who fear my name, the sun of righteousness will rise with healing in its wings, and you will go forth and skip like calves from the stall. Malachi 4:2

- By faith in the name of Jesus, this man whom you see and know was made strong. It is Jesus' name and the faith that comes through Him that has given this complete healing to him, as you can all see. Acts 3:16

- Jesus was going through all the cities and villages, teaching in their synagogues and proclaiming the gospel of the kingdom, and healing every kind of disease and every kind of sickness. Matthew 9:35

Again, I share these for those in a similar position or those who want to stand with us in seeing ZL healed.

Healing Playlist

If you've ever read my regular blog, you know I'm a playlist fanatic. I have a playlist for everything, (almost) every genre of music, every occasion, etc. And ZL's healing is no different.

This playlist is for me. I play it to shore up my faith that God will do what He has promised (more on that in another post). I play it to facilitate my prayer for ZL.

And this playlist is for ZL. I play it occasionally at night (especially after a harder day) as the kids are falling asleep. I want him, in whatever way possible, to have faith for his own journey out of the inability to communicate his feelings and desires.

I this share for those out there who are believing for healing themselves or for someone they love. Or those who would like to join us in believing for ZL's healing. Or those who are doing both.

- "Healer" - Kari Jobe
- "Make Me Whole" - Rachel Milstead
- "God of Miracles" - You Alive
- "Healing Rain" - Michael W. Smith
- "Fall in this Place" - Planetshakers
- "When I Speak Your Name" - Christ for the Nations

All of these songs can be found on iTunes.

Progress Report

A few new phrases and their significance:

- "Mommy, you soccer ball!" A friend is out of the country on a trip, leaving her husband to care for their four children. Two were down with a stomach virus, so we took the other two to a park for a picnic and some flag football. The flag football game consisted of ML & MS vs. the two friends. And the added challenge was that you had to avoid knocking down ZL, who was running along the field with the pack the entire time, thinking he was part of the game. He came to me at one point (texting a friend after a failed attempt to get him to kick the soccer ball around with me on the sidelines), said the above phrase, and ran off. Very clearly, he was demanding that I watch him play football (all balls are "soccer balls" at this point). He wanted to make sure that I was paying attention. This is a very definite milestone in both social skills (sharing experiences with others) and language (communicating that desire).

- "I kick the ball." Earlier, before the flag football game was underway, ZL was kicking the soccer ball around the field. I asked him, "Are you kicking the ball?" and he responded with the above. Six months ago, he might have responded "ball." A few months ago, it would have been "kicking the ball." That he inserted the correct personal pronoun (that he used a personal pronoun at all, for that matter) and that he changed the tense of the verb is note-worthy.

- "He crying." Listening to baby brother fussing about having to burp in the middle of a feeding, this was ZL's comment today. Commenting on things and people around him was something that was notably missing from his overall set of communication skills when he was tested this summer. We're getting there.

Sunday, October 11, 2009

I like meat!

I'm trying to balance between catching readers up on where we've come from and reporting on where we are/the progress we're making now. This post is about progress we're making now.

One of Z's new phrases is "I like/love...!" One of the first examples of his use of this phrase was a couple of weeks ago when ML offered him ice cream if he would go poo-poo in the potty at Burger King (a long shot, since we haven't had any success at all on the "big potty" yet, but a noble effort). Z's response was "I *love* ice cream!"

If you're just joining us on this journey, um, Z hasn't spoke in sentences up to this point. Six months ago, he had nothing but one-word phrases. When properly motivated, though...

More examples:
- When given some lunch meat last night for dinner, "I love meat!"
- In reference to Sonic video games (which he watches older siblings play; occasionally, but always joyfully), "I like Sonic!"

I don't know where he learned this phrase. It is possible that it came from the dreaded (by adults and siblings) "Y Ga Babba" (Yo Gabba Gabba) of which we own two episodes (bought before we really examined the droning nature of the show). Those have been a recent obsession, and I would love to think that something good has come out of that.

I am being realistic in assuming that the phrase was memorized from somewhere. We're not quite to spontaneous sentences yet. But he's taking a memorized phrase and adapting it to fit the situation, and that is *huge* progress, so we'll take that.

one thing Z likes: his GFCF brownies! (Bob's Red Mill mix)

Wednesday, October 7, 2009

Diagnosis Graphic

Before our awesome doctoral student assessor explained the autism spectrum to us, I thought that autism was a linear spectrum with Asperger's at the mild end and varying degrees of full autism on the more severe end.

Not that simple, it turns out. See, to put it simply, there are three components to autism: impairment of social interaction, impairment of communication skills, and obsessive behaviors or interests. To be diagnosed with full autism, a person must display all three characteristics.

Here's where it gets complicated, if a person displays a certain two of those three (impairment of social interaction and obsessive behaviors/interests), he/she has Asperger's. But if a person displays either of the other two possible combinations, the diagnosis is Pervasive Developmental Delay-Not Otherwise Specified (PDD-NOS). Basically, one set got a name, the other two didn't.

Z's diagnosis is one of those "other two." He has delayed communication skills and delayed social skills, but (as far as is evident at this point) no obsessive behaviors/interests. That last part was tricky. He sometimes lines things up, but only maybe 1-2 times a week. He's pretty interested in letters (and is already beginning to read), but he can take them or leave them, if he has to. Any of the little things that might possibly constitute a mild obsessive interest do not interfere with daily life, so they don't count. And that's a good thing. He definitely doesn't have the spinning, hand-flapping type of obsessive behavior, so that one was easier to set aside.

To help friends and family understand Z's diagnosis, we created a graphic based on the explanation above given to us by the assessor. I actually drew out the graphic for my in-laws when we went to pick the kids up after going over the diagnosis with the assessor. It was how I had pictured it in my head as she explained it. ML, though, is the graphic artist in the family, so he worked it up afterwards to include in an e-mail we sent out.

For those who are more visual:

Jump in!

Okay, I've been toying with the idea of creating a blog to document the process of our journey through and (in faith) out of autism since we got our PDD-NOS diagnosis for Z back in June. It's been a wild ride since that time (as it was several months beforehand), and I just haven't had the breathing space to do so.

Do I have "spare time" now? No, not really. But there are some specific things I feel like the Lord is prompting me to document, so here I am.

Randomly, what was the final catalyst was that a friend of a friend on Facebook asked about autism spectrum disorders (ASD's), and I wanted to link him to the graphic that ML and I created to explain Z's diagnosis to family and friends. But I didn't have a good place to post it. It didn't really fit on my regular blog. So I decided to go ahead and create this one.

I hope to come back and fill in some of our journey to this date soon. But for now, welcome to our journey to Finding Zachariah.