This journal is now friends-only, in order to better serve the purposes for which it exists. ("Friends-only" means you have to be a Live Journal member and on my privacy list in order to see most of my entries. There a LOT more entries in this journal than what the public can see here.)

I'm not adding new "friends" unless you are already a close, personal friend. To those of you who are, please consider getting a Live Journal and notify me of your screen name so that you can continue to stay in touch! You won't be able to read my hidden entries unless I have your screen name recorded and you are logged in.

It may take me a while to change all my old entries to friends-only, so you may continue to see past entries for a while.

Carolyn

Sorry I've been absent. We keep our computer upstairs and I've been avoiding the stairs (and our bedroom is downstairs) but just yesterday I had Seth bring it down. Adding to the usual intensity of the first week postpartum, Savannah has a virus with high fever. Thankfully she is not very sick except for when the fever spikes. But its made things extra tricky around here.

Here are a few pics. - Most of you have already seen them on Facebook. Jeanie Lechner took the portrait pics below....

Eva Claire Honea

born Thursday, April 30 at 6:50pm
7 lbs, 12 oz, 19" long

We got home from the hospital this afternoon. Little miss Eva Claire (said as Eeva-Claire) has been doing well, acting just like you would expect a newborn baby to act. I am tired and a little achey, but overall doing great. The birth was amazing. I'll post more soon hopefully.

Finally, some good news in the vaccine community...

Government to fund research into risk factors for adverse vaccine reactions, so that at-risk children can be identified and vaccines made safer

Hopefully some quality studies will be produced as a result.

Speaking of quality studies, or a lack thereof...you may have heard in the news about a study just released that claims to refute a previous study linking the MMR to autism. Specifically, the previous study found the measles virus in the gut of 75 out of 91 children that it looked at. All of the children it examined had developed gastrointestinal symptoms after the MMR. The new study that claims to refute this, ONLY LOOKED AT FIVE CHILDREN that met the same criteria (developed gastrointestinal symptoms after the MMR). The rest already had their symptoms before the MMR.

The study provides some useful information - ie, that many autistic children are experiencing these gut problems whether or not vaccines are involved (my children in this group) - however, what is most annoying is that it does not answer the question it claims to since you really cannot compare looking at five children to looking at 91 children. Such is the way it usually goes in the vaccine research world. :/ There have been so many opportunities to design vaccine studies in a quality way that would help put debate at rest (one way or the other!) but most of them are flawed from the start. *sigh*

Here is the first picture I'll share with you from our vacation...




Yep, I'm pregnant!!! We found out on vacation. My estimated due date is April 26, 2009.



I'm having a little bit of a hard time adjusting to the idea of having three children this soon, but my desire is to be able to have this perspective...

Here is a sweet, fragrant mouth to kiss; here are two feet to make music with their pattering about our home. Here is a soul to train for God, and the body in which it dwells is worth all it will cost, since it is the abode of a kingly tenant. I may see less of friends, but I have gained one dearer than them all, to whom, while I minister in Christ’s name, I make a willing sacrifice of what little leisure for my own recreation my other darlings had left me. Yes, my precious baby, you are welcome to your mother’s heart, welcome to her time, her strength, her health, her most tender cares, to her lifelong prayers! Oh, how rich I am, how truly, wondrously blest!
--Elisabeth Prentiss, Stepping Heavenward

Here are some pictures from Bryan and Gen's wedding. Wesley was ring bearer. The ceremony was held at a tiny old church in Davidson.

	My brother Stephen walks my maternal grandmother down the aisle
	Jonathan walks mom down the aisle
	Wesley followed close behind the first flower girl.
	They wanted him to hold the blue Tiffany box instead of a pillow...at first this change from routine was very upsetting to him but thankfully he got over it
	He had this cheezy smile on this face most of the way
	Bryan awaits his bride
	The vows
	Seth had to remove Wesley during the ceremony(that boy canont hold still or keep his mouth shut for FIVE SECONDS)but Savannah did well. She was content to sit on someone's lap and eat snacks, although she babble softly quite a bit. :)
	the wedding party
	Savannah and I outside the church
	This is the home of Gen's family. The dinner reception was held in the backyard on their beautiful patio. I am kicking myself for not taking any pictures in the back during the dinner. The Schaaf's have used their home and the facilities on the property to serve in many ways, from hosting foreign families, our meetings in their riding arena, church picnics, etc.
	The Fam
	My parents with the newlyweds
	Wow, we need a diet!!

Here are two must-see news clips from CBS news from an interview with Dr. Healy (former head of the NIH) about how the government does not even WANT to do the right kind of research into the vaccine/autism link. She hits the nail on the head, over and over again in these few minutes that are worth your time...





I also want to reiterate that Wesley did not show any obvious vaccine reactions, and was showing atypical development almost from birth. I am convinced there are many causes of autism and that it will probably prove a complicated mix in the end, but I have no doubt for some children vaccines are a cause of autism and that possibley for other children like Wesley it could be one more thing added to their "toxic load" that pushes them further into the abyss of autism. Thank goodness God has guided us to paths to help pull Wesley out of that abyss!

Know the signs of autism in a one year old:

• does not point to indicate desire and show interest by 12 months


• does not spontaneously use several gestures (waving, clapping, giving, lifting arms up to ask to be picked up, shaking head, etc)


• difficult to engage in joyful back and forth interactions


• does not use one word (in addition to "mama" and "dada") by sixteen months


• does not use two word phrases by two years of age


• does not respond to his or her name


• loses language or social skills


• avoids eye contact


• doesn't seem to know how to play with toys, or has limited interest in them


• excessively lines up objects, or odd repetitive play


• does not engage in pretend play (like feeding a doll)


• at times acts deaf


• seems to experience senses differently (hearing, taste, touch, balance, etc)


• doesn't seem interested in other toddlers

Keep in mind, these are just a few of the "red flags," and they are a little tricky because most autistic toddlers show these red flags inconsistently and will only have a few of symptoms at one time. Also, as autistic kids get older, the symptoms may change.

For more on the symptoms: For babies age 6-24 months try this developmental profile. For children age 2 and up, try this autism screening questionnaire. Also, view the autism risk checklist pediatricians are supposed to be providing parents at the 18 month and 2 year well checks. And lastly, visit the Autism Speaks video glossary.

CNN video clip: Don't leave it up to the pediatrician to catch autism

Adventures in Autism: a blog that goes beyond the biased headlines and explores autism research and its biomedical side

It was almost exactly one year ago, on February 26, 2007, that I posted my first entry wondering if Wesley was on the autism spectrum. What a year its been since then.

I remember a friend encouraging me that "in six weeks you'll know all there is to know about autism" since she knew my researching type approach. But in truth, it took me six months of intense learning to feel like I understood the basics of autism. And I am still learning more all the time. You can't fully understand something that even scientist are only scratching the surface of.

Two things strike me as I think back over this journey. The first, and most important, is how different Wesley is today than he was a year ago. He is truly like a different child. I think of the confused, overwhelmed, foggy-brained child of a year ago, and he bares only slight resemblance to the alert, social, chatty boy I have today. I thank God for opening our eyes when he did so that we could take advantage of the important window of early intervention, both through therapies, biomedical treatments, and adjusting our everyday interactions with him. Thank you, Lord! Its hard to believe how far he has come. The people who work with him are astounded by the changes in him.

The second thing that strikes me as I consider where we were a year ago, to where we are today, is that while many things have changed, many are still the same. He is still autistic. Social interactions do not come naturally for him, his understanding of language has a lot of deficits, he struggles with "emotional regulation" (what might be called "self-control" in spiritual terms!) and he is very obsessive and repetitive. He still has sensory dysfunction, but it is improving. I have decided that some of the quirks that were cute in a 2 year old, are not cute in a 3 year old. But at the same time, his autism is part of what makes him who he is, and I love his sweet and funny personality.

One of the things that sometimes haunts me though, is wondering what he would have been like if it weren't for autism. Of course, this isn't a wise path to let myself go down, so usually it is only for a moment that my mind wanders. But I sometimes think back to when he was 18 months old, and one day he woke up and was a different child. I thought it was just a little phase, since everyone has "bad days" or even a bad week. But I clearly remember telling my friends that "three weeks ago" he woke up and was in a bad phase ever sense. It wasn't a classic regression, in the sense that he didn't stop talking, but something changed overnight. *sigh* (There were plenty of signs before then, too.) It was right around the time I got pregnant with Savannah that things deteriorated, and I remember really struggling with Wesley's "phase" during my pregnancy, all the way until God mercifully drove me to desperation (and thereby answers) when I was just 6 weeks postpartum.

So, anyway, here we are, one year later from when reality finally hit me over the head. As I type I hear him chattering away as he plays with Anna (she's 8) in the other room. So different from a year ago, when he usually only talked in one or two word phrases and rarely communicated anything meaningful, and didn't know how to play functionally with toys. Some of the best times have been watching him be able to play normally, hearing him call me "mama" and say "I love you," and no longer feeling like the fog between us is quite so thick.

I wonder what this next year will hold...

(And God help Savannah escape this!)

Here are three of my favorite therapists who have helped with Wesley...

	Wesley's first speech therapist. She was great!!! She even indulged him as a reward with some drum fun.
	Wesley's "play therapist" who helped me learn Floortime and got Wesley doing pretend play for the first time ever.
	Wesley's current occupational therapist, who is making good progress working on Wesley's coordination, hand strength, sensory, and getting all those brain-body connections to be made.
	My sweetie!

 

The past month we have had several fun family times. On Labor Day we took the kids to the NC Zoo...their first trip. Wesley had his 3rd birthday with a big family party. And then we went to the transporation musuem. We haven't done many outings like that because of financial constraints and the stress of hauling two little kids around...but now on both accounts we are able to start doing a little more. Its so fun!

	NC Zoo
	And, we have some exciting news - my younger brother, Bryan, and Gen are courting!!!

Click here for more pictures

I often think about how Wesley was showing some very classic autistic signs leading up to when I first took him to the pediatrician in February to discuss my concerns...the appointment where she agreed he was probably on the Autistic Spectrum and referred us to specialists. But not long after that appointment, he started to show amazing progress, so that by the time he had his first formal evaluation about 2 months later he already did not display as many obvious autistic signs, making it more confusing for the evaluators to figure out what was going on with him. Over the past six months since then he seems like a different person. I often ask myself, why the change? Many people have remarked on how different Wesley seems. In his Sunday school class they voted him "most changed." Not that he is "normal" now...haha...he still displays autistic characteristics that seem obvious to me (because I observe him 24/7), although they are much more subtle now and probably not picked up by most people.

I have two theories for why the change. One, is that right after that fateful pediatric appointment we had our church small group pray for him. I believe God used those prayers to give him a boost up the developmental ladder (though apparently not "curing" the underlying cause).

My other theory has evolved more recently. When I started to learn about autism back then, I immediately came across the diet interventions, and had quite a few people tell me firsthand about it. Even though the thought of a dairy-free/wheat-free diet seemed wacky to me back then, I went ahead and started to reduce how much milk Wesley drank. He used to carry cups of milk around with him all day and didn't want to eat solid foods if he could drink milk instead. So first I reduced his milk intake to just a cup at meals. This was around the time he started to make sudden improvements. Now I don't give him any milk to drink (some soy milk right now, maybe will try rice milk). I'm sure most of you are completely puzzled by why this would have anything to do with autism, so I will try to give a very brief explanation of a complicated theory:

Science is increasingly showing there are many different "types" of autism with different causes. One type appears to be a group of children who have abnormal immune systems and are missing some important enzymes that help with digesting the proteins found in milk and wheat. For this group of children, the undigested proteins end up leaking from their gut and they have an immune system reaction to them, which ends up effecting their brains...ironically, it also results in them craving those foods. Just like Wesley, these children tend to have chronic diahrrea and self-limit to dairy and wheat.

I'm not ready to completely eliminate dairy and wheat. These products are found in almost anything you would buy in a typical grocery store, often camaflouged by different names on the labels. But I am trying to reduce how much of these he eats. If he was severely autistic I would certainly do the complete elimination diet, but I'm very happy with his progress and have read complete elimination may not be necessary.

So, whether it was the prayer that directly helped him, or, if God used the prayers to guide to a way to help him...either way, I am grateful. And I am eager for more research to be done on the underlying biological causes of autism. I am nervous for Savannah, who displays some worrisome behaviors (more on that another day), and hopeful for the day when the puzzle of autism will be solved.

Here is an article from Discover magazine about the latest research on how autism is increasingly being understood to not just be a condition "of the brain" but affecting the whole body. Autism: It's Not Just in the Head

Yesterday we saw Wesley's pediatrician (whom I only like more and more with time!) about our concerns about his development as well as normal sickness. He's had a sinus infection ever since he got the flu in mid-December. We tried one round of antibiotics but I haven't been aggressive about continuing to treat it with antibiotics because I hate the way antibiotics mess with his system and don't want him building up resistance. Last week when we were at the pediatrician for Savannah's well-check I had them check his ears because I suspected an ear infection (he had told me "turn ear off" - try deciphering that one!). Sure enough, he had one ear infection though it looked mild. I opted to wait on antibiotics and see if it cleared up itself. Well I could tell it was gettign worse, so I had them check his ears again yesterday. Double ear infections now, with the first one looking much worse. So much for "it will clear up on its own" theory about ear infections. Right now I quite irked at anyone who says antibiotics are bad. I wish I had gotten it for him sooner and feel really badly for all the discomfort he has been experiencing.

Okay, so back the developmental stuff. I shared with her a list I wrote up of various developmental concerns and signs of Aspergers Syndrome (a mild form of autism, for those of you just jumping in now). She was immediately very concerned and referred me to have him undergo a complete developmental evaluation. She also suspected Aspergers. She was very kind and reassurring, but I could tell she was very concerned. She asked me a variety of questions and tried to interact with Wesley. He certainly showed off well for her, not answering her questions and not making eye contact. LOL So I called and left a message with the county service that handles early development and they will call me back to setup an appointment. I have no idea how long it will take to get in.

At some point I will post about my thoughts and feelings on all this, I just don't have the time to right now. As you can imagine they are varied - from relief that there are finally some answers that make sense, to concern over Wesley's future and ability to fit in normally, etc. Here is the list I gave to the doctor. Many of these things I wish I had paid more attention to in the past, but I was trying not to be a worry wort and in some ways he fools us well because of his very expressive facial expressions and affectionate nature. Also many of these things by themselves could be regarded as normal two year old behavior. Its the more alarming symptoms that makes the culmination of common ones concerning...

• Preoccupied with certain interests (clocks, drums, the moon)
• Plays with or talks about interests to the exclusion of other things
• Doesn’t understand laughter (he cries)
• Can repeat back words but often doesn’t seem to understand the concept/meaning
• Good at rote memory
• Uses certain phrases excessively, repetitive speech
• Talks “at” rather than “to” (few two-way conversations)
• Inappropriate speech volume and rate
• Limited gesture use (he never pointed as a baby, never waved until we worked with him a lot and still won't unless specifically directed)
• Difficulty communicating frustrations and feelings
• Difficulty answering questions (“Where is your ouchie?”)
• Very routine oriented, loves the familiar
• Excessive separation anxiety
• Fear of unfamiliar social settings
• Plays by himself, except for a few familiar buddies
• Turns away when being talked to, limited eye contact with anyone except family
• Distances himself or avoids interaction (after a date night, he tends to go the opposite direction instead of greeting us, even though he is really happy we are back)
• Clumsy (poor judge of proximity?)
• Cries a lot, sometimes unexplainably or over little things
• Possible light sensitivty
• Possible noise sensitivity
• Possible texture aversions

Edited much later to add: I later learned that Wesley had other serious signs that I didn't have on my list.

Wesley is such an oddball, and always has been. We've mostly chalked it up to a quirky personality and assumed he would outgrow most of it - or in some cases respond to discipline/training. But increasingly I'm starting to wonder if there is more to it. One example of his quirks is how ever since he was a baby he would cry when people laughed. We used to think it was just the loud sound that startled him, but he STILL does this and lately the crying often turns to screaming.

Another quirk is his very intense, narrow preocupations with various things. He used to be intesely preoccupied with "on" and "off" functions (mostly lights) to the point that it would drive everyone crazy. Lately his preoccupations are with the moon, clocks, and drums. He gets preeocuppied to the point that its hard to get him to talk about or play with anything else.

At his well-visits, he's always been on the border of developmentally delayed in communication and social skills. Its hard to explain or pinpoint, because he's always done fine as far as knowing the normal amount of words but its been more a case of how he uses words to communicate. So the doctor has always mentioned him being on the border of her recommending therapy. I'm supposed to bring him in next month (he'll be 2 1/2) for reevaluation.

These are just a few of his oddities. Recently I've been wondering more if he could have some kind of developmental disorder. Specifically, what I've read about Aspergers Syndrome sounds a whole lot like Wesley. I'm going to do more research and talk to my mom about what she thinks, since she has observed him a lot. Aspergers is considered part of the Autism Spectrum but there is no mental retardation with it - in fact, its not unusual for people with Aspergers to have above average intelligence - and they also don't display the aloofness characteristic of autsim.

Aspergers Syndrome

ETA: I just talked to my mom and she said that she has been thinking the possibility of him having Aspergers and was going to talk to me about it this week. Tomorrow I'm going to try to get in to see his pediatrician and discuss our concerns.

Here is a picture of mom and baby Savannah

Alrighty...I was a bit slow in putting this up as I was at work and doing a few other things, but I (Jonathan - Carolyn's brother) have the privilege of announcing that Savannah Renee Honea has been born!

Savannah was born a little after 3 pm today. She was 7 lbs. 6 oz. and 20 1/2 inches long. Both Carolyn and Savannah are doing well and hopefully peacefully resting in the hospital at this point.

I'll let you all know if I hear anything more.

God bless,
Jonathan

Just a reminder to rebeccaswan and blackburns - if you are around - that you need to be logged in to your user name in order to view most of my entries. And feel free to join in the conversation! To comment, click "Converse with me" below each entry. Hope you both are doing well!