Brain: The Body's Ocean

We love NASA in this country, don't we? We love the thrill of space, the daring astronauts risking their lives, the occasional astronaut donning a diaper, the scientific discovery of super glue and Tang, OK neither one really were invented at NASA, and the antiquated space mobile aka the "Shuttle" that is about as reliable as a 1986 Plymouth Reliant with 197,000 miles on it. We love exploration I guess. And what is more fantastic than not leaving our own gravitational pull and entering the depths of the ocean?

Anybody old enough to remember Jaques Cousteau? Whatever happened to these adventures? He was a household name for heaven's sakes. Anyhow, I hate deep water. It freaks me out. However, I love to be near and in the ocean. The ocean is a very compelling area of the Earth. It covers so much of it, we have only seen so much of it, and it contains mysteries and history. The irony of the ocean is that it is largely unexplored although totally exploited. We have overfished the waters and dumped pollutants in it. I realized only recently that the human brain is much like the ocean waters. We know it's important, however, we don't really understand it, have likely only scratched the surface in researching it, and abuse the snot out of it.

Zach went to the neurologist the after conducting a sleep deprived EEG a few weeks ago. I have yet to write about it because it let me with nothing, well flabbergasted and hopeful and questioning at the same time, for a sum total of nothing.

Leanne's Overly Simplistic Science Nugget of the Day; An EEG, or electroencephalogram, is a test that monitors electrical activity and patterns on the brain. These patterns can indicate seizures/eplipelspy, brain tumors, even infection or injury, although MRIs are more typically used in the latter. Can it measure intelligence though??

We have not seen the actual EEG results or the write up. Last time we were able to see what two doctors besides our doctor interpreted on the EEG. The two doctors stated that there was a spike in the frontal lobe that looked anomalous, but that they did not believe it to be epilepsy. Our doctor said she could tell where they might interpret that from, but that she doesn't believe it was anything extraordinary that warranted any attention. My take: I have a kid who has a disorder that affects roughly 1% of the population, and I have a kid that has something noteworthy by two physicians to warrant a remark although not a condition or dx. Are the two somehow related? Is there something to investigate? I think like much of other parts of our world of autism, if we were to pursue this we would have to think about that once we get further information, what would we do with it? The fact is, there is no rulebook for kids on the spectrum and neurological brain activity, as measured by the EEG. Since there are no defined or accepted characteristics of autism and brain activity, there will be no treatment options. After our first visit, the doctor told us he was fine and likely a little math genius, not to worry. She also recommended a second EEG since two give a more accurate portrayal of what is going on, so that is why we scheduled the second.

What did the doctor say to us this go around? He has an EEG pattern of an older child. She actually stated he likely had a high IQ - closer to that of a six year old. Where did she get this from? She states the maturity of the wave patterns. She then remarked: "You don't have him in some intensive program do you?" Insinuating that it is unnecessary. Mind you, this is a woman with a PhD and an MD from prestigious Ivy League schools and a stint at the Mayo Clinic, leading me to believe she has an IQ much higher than my own. But does that mean she really knows what she is talking about, especially in regards to my beautiful son?

Off I went, into the wild wild west of published papers on the topic of intelligence, IQ, brain wave acitivity, and EEGs to find these recent studies:

• Research published in Clinical Neurophysiology in 2005 concluded that neural efficiency and increased brain complexity is positively related to intelligence.
• Other research also had some similar findings, one article entitled "Intelligence and neural efficiency: The influence of task content and sex on the brain–IQ relationship" had similar findings in both 2001 and further research conducted in 2005.

These were nice to read - but there was a lot of research on the topic and even though individual researchers made conclusions about this (some say yeah and some say nay BTW) there doesn't appear to be any overarching body declaring these findings.

I would love to believe that Zachy is really intelligent - don't we all want to think that about our kids? However, so what's up when it comes to him not talking and communicating? Right now when I talk to Zach, I feel like we are on a Charlie Brown special where the teacher is going "wa wa wa" (sound of muted trumpet I believe.) He knows a few words (sort of like when Buddy was around, he heard "ride", "treat", "Buddy", "no" and everything else is just noise. What good is all this hidden intelligence?

Nobody "knows" - from what I can gather, the brain is too unique to each individual for them to make the assertions they can about our other organs. The brain is still such an unknown part of the human body still needing much more exploration.

So what the heck am I supposed to do with that information? I am not sure what my gut is telling me anymore. At the time I wanted to slug the doctor and hug her at the same time. Confused? You bet. I guess my instincts tell me to feel hope that he will be functional, keep the therapy up, keep the supplements/diet up, give school a chance, fight for more services, and most importantly play often, smile even more, and love endlessly.

I don't want to be normal.

While perusing YouTube for ABA clips and the latest AutismSpeaks video that created some controversy, I found some interesting clips of a young woman who claims to have high functioning autism. After watching the first video I thought she might be part of a hoax.

I loved her interesting inflection, tone of voice, her lisp, word choice. I was intrigued. I loved the obvious editing. Her refusal to say grapheme color synesthesia made me laugh. I happen to know someone who has this condition - which I find so fascinating myself. After watching this video, I was still concerned that someone may be playing a cruel joke.

And then I saw Whitney's second video. One look at the bird on her head and I knew this was likely no hoax. LOL She rocked throughout the video and had to take frequent breaks to look away from the camera (something that was pretty compelling to me alone since she didn't just merely move her eyes, but made body movement to look away). It had so many terrific lines in it, amongst them my favorites included:

"I enjoy having an obscene thirst for knowledge. "
"I love having time to research any topic that happens to strike my mind."
"I really don't have friends....I don't want a whole bunch of friends. That is too much work... I actually find it very draining to be in a social situation with more than four people."
"I thoroughly enjoy being autistic."
"To me it is a difference in perception"
"I am proud of who I am... I am perfectly happy the way I am."

Of course, when I read these things I am drawn to them because of my same sentiments. I realize, although I am not autistic, that there are elements in my personality that are very parallel to this disorder. I am very socially interested in people, yet can be very awkward. I love love love learning although am only a marginal student. I realized recently that I have been told throughout my life that "You need to listen". I bought book after book about this. I thought I had a reading comprehension problem. Then, in the last year after learning so much from my children, I realized that I may have a more overarching problem with perceptive language. I am not always good at deciphering metaphors, and can recall hating high school English because of the constant need to analyze the symbolism in stories. After realizing that it was going to be the only way to survive those classes, I would pick something randomly int he story and come up with a grandiose story of what it symbolize in the universe. I would receive praise for my unique thinking, get my god grade, and feel like a complete phony since it all felt so contrived to me. It just wasn't in my nature.

Many people have always teased me about my word choice. I tend to use a mix of the vernacular (hip phrases to make me appear modern) with not often used word choices that as one friend told me "seem like I am trying to be British or something." I guarantee you that this has never been on purpose. Some of my language I think is derived from my mother and perhaps because of the nearly 40 year difference between her and I, I have unusual although appropriate word choices. For instance, instead of saying "that is great" my inclination is to say "that is wonderful" or instead of saying "he is a nice guy" I might say "he is a nice fellow" or even worse "he is an affable fellow". Let's not even get into the rubbish vs. garbage thing! :) My mom is a walking dictionary - quite good at crossword puzzles (which I am most certainly not) and likely has a distinct vocabulary.

I do not do this on purpose. Besides Madonna, who does? However, I think it does lend itself to having some people make fun of me, and some people comment on how "well spoken" I am. Uhh, OK.

Another item I have noticed - I am terrible with my friendships. Not many people come rushing up to me on facebook I tell you. First off, the perceived "I'm not listening" thing probably doesn't get me very far in this area. Furthermore, I have very bad instincts when it comes to what another person wants me to do. I have difficulty initiating any contact with people, e.g. I am petrified to call anyone on the phone. I am usually one of the last people to leave parties or get togethers, and guess that I tend to overstay my welcome. I am good at the eye contact thing. However, when I make an effort to understand all that is being said to me, I would guess that some find me staring because I tend to overly concentrate on what they are saying to me in order to really get it. In the end, I care about other people very much (in fact my mother always said I was too sensitive), but likely am not meeting their needs of feeling heard and understanding their needs, so a lot of people likely just stay away. It's too complicated to be my friend. Indeed when I look at those who I would call true friends in my life, I would have to say they are an exceptional bunch who have stuck with me and my social shortcomings. They call me, check in with me, and realize that even though I may not do the same with them always, it isn't because I don't care, I am just a freak.

The last line I quoted above is the one I currently find most compelling.

"I am proud of who I am... I am perfectly happy the way I am."

I don't have that in my own life right now. I want that. Most importantly, I want that for my children above all else. And I want to make this point vehemently clear. One day, Zach may read these vignettes I have written about life, and our experiences with autism. I never want him to feel that we do not love him with every bone in our body, just as he is, autism and all. I never want him to feel that he was a burden, because he most certainly is not. He is a joy in my life, that I would be so miserable without. Had I known that he was autistic while in the womb, I may have contemplated what that meant, however, I will never regret having him. He has brought new meaning to my life. He is teaching me much about myself and about love, and life itself. He has helped me not take life and it's simplistic gifts for granted. He is a perfect little boy who I want to be happy and proud.

I once worried what all of the huabaloo in our lives would mean to Sophie - so much attention and time devoted to little brother could be vexing to such a young psyche. I don't worry as much now. I realize that one day she, too, will also realize so much more about life because of her little brother. I hope she will realize her gifts in this world and learn how to use them in unconventional ways. I pray that she will not become yet another cog in the wheel of society, merely getting through the day to earn another paycheck. (BTW - I am all about financial security and don't take that for granted.) I hope that she will understand the imperative of serving others who are different than herself, not unfortunate, just different, helping them to find their path in this world, whether it be her life's work or through small gestures.

I may not be the most normal person, even though I would like to be moreso. But I would have to guess that wanting my child's happiness is very normal, so maybe I am OK anyhow.

Things I Don't Write About and Silence

There are things I don't write about. I have begun to wonder why. Some of it is my self censoring - I don't want to write about things that even though I experience them/think about them/ feel them, they would be extremely offensive or upsetting to many. Some things are too personal and only between me and the individual and not meant for public consumption. Then, there are the things I am just embarrassed about that I cannot bring myself to disclose them.

In the end, I do try to give as honest a description as I can render up. I haven't been running in 2 months. Yep. Embarrassed about that one. I am likely in depression, trying to avoid pharmacological answers to this one, but struggling. Not exactly proud of this one either. Our marital difficulties - well, they are more than I ever could have imagined coming from the two of us. Two people put in the worse experience of their lives together doesn't always produce the tight bonding moments Hollywood would have us believe. Will we come through this? I think we have to - but is sure is hard. We are both exhausted and unlike the exhaustion we used to have of just being parents to young children, this exhaustion has a mystery. You never really know what is going to happen to your kids or what their future might be, but with typical kids you can take certain things for granted: walking, talking, eating, toilet training, getting dressed on their own, learning to ride a bike, going to school, playing sports, making friends etc. What of these steps of development will occur with Zach "naturally" and what will require specific teaching methods? What can he accomplish at all?

After reading an article recently, I realized how scary the future can be. Say we get Zach talking, even going to school with minimal services, but not quite fully functioning - what is his future then? From what I am reading, most support services for adults are offered for those with IQ's below 70. There is a pretty significant group of kids who fall in the middle here - neither retarded and eligible for services/support nor are they fully recovered/functioning. What happens here? I read the story of a child who has an IQ of 170 - however, when someone approached them and introduced themselves to him, he turned to his dad and said "What am I supposed to say?" This is a kid who would beat the pants off of most everyone on just about every standardized academic test there is. Will he be able to function in the workforce where so much of the world is based on social skills and not just talent/abilities?

Whenever I get into a place where there are hard decisions to be made, I usually procrastinate and avoid people which usually ends up leading me to a sine (270) or a negative phase of my being: depression. Here I am, lingering. At some point an epiphany of sorts usually appears that everything becomes clear, and I go forward. Where is my epiphany? I am stuck out of phase with life.

The big issue plaguing me: Is Zach making progress that we are comfortable with? Answer: No.
Do we go back to a home based program? Do we add home services to the school program? Do we move to Rochester for better services? What about my Mom if we do? Is the ABA not right? Is it the service providers? What about the homeopath we saw - do we start down this path?
More biomed? Am I messing him up when I work with him at home? Uh... yes. Learned that lesson this past week.

Zach now wants to say "ting" every time he wants something from me whether it be milk, to be picked up, a food item - they are all "tings". What is a "ting" - ahh... think of a cheetoh minus the cheese. He loves these and they are very "reinforcing" for him. The developers of his current programs had decided to use them as one of the objects he requests (or using the Skinner language "mands") since they are so reinforcing to him. This was the only edible object on the list of 5 requests we make Zach say before providing the item/action. The other words on his request list are: squeeze, jump, train, and up (as in pick me up).

When Zach was home with what I believe may have been H1N1, I attempted to work with him. Out of all the words on his list, currently, the ones he finds really reinforcing at home are "up" and "ting". Indeed, when he was ill, there was no way to get him to squeeze, jump or train. Well, I think I may have overdone it on the "ting" because now he is overgeneralizing the use of the word - in other words - everytime he wants something from me, he seems to say "ting". They aren't seeing it as much in school, which makes me think that I am the royal screw up in this mess.

The overgeneralizing is likely caused by me not varying his requesting words enough. *sigh*

In the past month I have been told the following:

• DAN ! protocols don't work (diet, supplements, meds)
• He is high IQ - that of a 6 year old, do not put him in a intensive program.
• His program is not intensive and individualized enough.
• He doesn't need a special diet - he needs to address his physical symptoms homeopathically.
• He has "vaccinosis" and needs a treatment that will likely cause skin eruptions (boils).
• You need to find time for yourself.
• Zach needs more targeted and specific attention from you and your husband.
• You need to get a private program going for Zach.
• You should go back to work.
• You should do more advocacy work - you are good at it.

Let's not mention the books I have been reading. My head is spinning. We have so many experts telling us what to do. We have so many parents telling us what they recommend. We people who are neither experts or experienced butting in too.

One day at a time, right? It doesn't work out that way when you are being told by some of the experts that every day counts at his age. You need to push, but not so hard that things break. Not so hard, that you cannot handle it. I hate the fact that this makes me weaknesses and failures so apparent. I hate the fact that my weaknesses and failures can be a huge detriment to my children.

He is happy. We have fun. I feel lost. Is this what life will be like for awhile?

Off to get Mom's orthopedic socks on and wash her hair. The life of luxury I tell you.

And it goes on.....

This kids are OK.  However, Zach's cough has changed and increased.  He is coughing a bit more than before - although no fever.  It is no longer that weird barking cough, but instead a "have something dripping down the back of my throat" cough.  His eyes have a slight dark discoloration under them which leads me to believe this is something sinus/nasal.  He is not eating well and in fact has thrown up a few times a day or two ago after gagging on what I believe is stuff running down his throat.  Poor little guy.  He wavers between happy/compliant/engaging to cranky/wining/wanting to be held.  I am so glad that when he is not feeling well, he does not push me away.  However, with this blessing, there is also the curse of not being able to attend to other tasks - including cooking and cleaning let alone any me time.  Steve has been out of town until today so things have fallen apart a bit.

In the 6 days that have passed where Zach was not in school, I let him just lie around if he appeared really tired.  But when he was more affable, I took advantage of the opportunity to work with him on the programs in his curriculum plus a few things we do at home.  Right now, his overall curriculum is pretty basic.  The director at his preschool has slimmed down the initial programs she developed for him, after observing that he didn't seem to respond as anticipated based on the profile the EI team passed on to them.

We noticed that some skills had regressed of his, and that he was saying less since in the school program.  This is when we asked the school district to provide some additional hours in his home environment.  We felt that the intensity and individualization has been substantially toned down since entering the preschool only program and that by adding in some 1:1 time at home, he would have all his requirements met.  He has benefited from school program, we have seen an increase in his social interactions and transitions (response to change).  He has shown his teachers a lot of affection which I know means he likes it.    A November 16th meeting will help to seal the fate of if the school district/county will provide this for us.  The way it works is at this meeting, the school district will decide if he needs it and the county will be there to represent their interests which is basically financial - they are the one who foots the bill.  As of Friday last week, we now have legal representation to help us through the process.  I am hoping that this guidance will make all the difference.

I am typing this as I stay up listening to my sweetie cough in his sleep.  Will my sleep overcome my worry and allow me a few hours tonight?

I got my Tigger back

Boy was yesterday sad. Zach didn't drink, he didn't eat, he didn't move. He was so lethargic. His fever got as high as 102.7. He refused medication - and made a mess in the process of his refusal. No playing today - just a lot of cuddling. As previously noted, when the kids get sick, Zach always gets hit harder than Sophie.

I am not sure if I mentioned Zach's most prominent stim lately.  First of all, for those of you who aren't aware I'll give a brief description of stim. A stim is a "self stimulatory behavior" that is commonly seen amongst children with sensory issues, autism and other neurological disorders.  Many kids with autism either rock back and forth or hand flap.  They say that these behaviors "feel good" to the children and are meeting some sensory input the kids need.  Zach used to shudder his arms, then he occasionally has a weird facial tick, but the most prominent of them all (at least for the last 6 months) has been jumping up and down, quite like Tigger.  We have a trampoline which he will use, and he loves any bed, but the plain ol' floor will suffice too.  I never thought I would say this - but I am so glad to see my little Tigger again.  A day of listlessness, no eating, no drinking, fever, and vomiting, and no way to communicate to Zach what is going on, or have him explain how he feels; not fun.

No fever for Sophie for two days, so back to school she went.  Zach had no fever this morning.  If he follows Sophie's pattern, it will be back tomorrow.  I really wish I knew if this was swine or not.  The doctor's office didn't want to see him or have him tested, so I just don't know.  The barking cough the kids had was a very distinct and common symptom that some of the local people I know who tested positive for H1N1 had.  Hopefully it was swine, and it's is done and over with in the Morphet household.

Hope all area healthy elsewhere. 

Made it through the night

The three of us cuddled on the couch for the evening.  I listened to the kids cough most of the night, and made sure they breathed. Don't mean to be obsessive about this stuff , but I am sure a few of you out there think I am.  For the record - any illness that has an accompanying fever is what really does me in.  A few of you may remember from previous blog entries that Zach's initial regression was after a high fever for a few days in  early July 2008.   I am not as nervous about how this flu will manifest itself as I am worried about what it will do to Zach's autistic symptoms.  Will he lose speech again?  Go off to the corner and rock again?  Been down this path a few times to be cavalier about this. I think the possibility of seizures is what really gets me. 

5-10 days is what the nurse told me.  Sophia was fever free this morning although that cough is just terrible. 

Although I am not happy that my kids are sick, I have to reveal a little secret:  this feels like a vacation.  No school or therapists.  No demands.  Just time to play with my kids and cuddle - and we are.  The sun has been out the past few days which feels good in typically gloomy ol' Syracuse. We have played the games Trouble, Memory, and Whack a Mole (my personal favorite that I frequently will play by myself only to look up and see looks of disgust from the children on how much I am into it), played at the train table, with Match Box cars, fooling around at the piano singing songs,  doing puzzles, flash cards (Zach's particular favorite because they are Thomas themed).  And a few videos and lots of cuddles.  It is such a change to just be like this.  Is this God's way of giving us a break?  Wish it wasn't accompanied by such a nasty sounding cough.

We've Been Swined - uhhh I think

Is it H1N1 or isn't it?  Does it matter?  

No more visits to Mom.  Hope she is doing OK - hoping I didn't inadvertently pass something to her.  Ugghh. 

The kids are both running fevers and have a barking cough.  A call to the pediatricians office revealed nothing.  They did not recommend bringing the kids in to get checked out nor getting any tests. Zach got up to 103 degrees tonight.  I actually managed to get ibuprofen into him which got the fever down to 101.  He cannot tell me what hurts.  I cannot tell him why I need to put 5 cc's of oozy stuff into his mouth.  Oh by the way, attempt # 1 of oozy stuff caused immediate vomiting.

I feel like throwing up myself, but I am not sick, just worried.