Wishes

I remember a few months back, when Zach was walking around saying "I wish, I wish, I wish". He did not continue to "wish" for things, in fact, we haven't heard him say it a single time since. Probably because we haven't watched a Care Bears movie in a few months either...

Echolalia, scripting, Gestalt language. That's what the experts call some of this. Echolalia is basically when Zach parrots a word/phrase we just said to him. When I ask Zach: "Do you want a cookie?" He will respond with "cookie" back to me. In pure echolalia, Zach would have said back to me "Do you want a cookie?", and not becuase he was curious if I had a Chips Ahoy in my future. Originally when trying to teach Zach to request (also referred to as "manding") for a cookie - we would just hold the cookie up and say "cookie". If he echoed back "cookie", we would give him the cookie, giving him a meaning to his utterance, so that hopefully he would understand that the round thing with chocolate chips in it had a word associated with it (labeling the item) and that if he said it he would get one (teaching him to mand for it). Eventually we were able to add the other words to make the phrase "Do you want a cookie?" and Zach continued to utter cookie if he wanted one, using it to mean "yes" which Zach still does not understand.

As of today, it appears that if Zach wants an item when we ask him, he will echo back the item. If he does not want it, he will say nothing. At least that is how we are treating it, and thus giving it that meaning. There is no "yes" or "no" in Zach's vocabulary. Well, most of the time. When pushed to a limit, I have heard Zach say quite clearly, appropriately, and vehemently, "NO!". LOL "Yes" and "No" seem like they would be some of the first things a child would say. Zach still struggles with making a choice, as do other kids on the spectrum.

The words Yes and No are often used to indicate preference. It can be very hard for kids with ASD to understand because preference is an abstract, social concept and it is hard for kids on the spectrum to understand that different people like different things. It can also be hard for a child with ASD to understand that he or she can also just choose one thing one time and another thing another time based upon preference. Tahirih Bushey MA-CCC,Speech Language Pathologist

Yes, No, More - SLPs (speech language pathologists) frequently try to elicit these words first from a child since they come more naturally for typical kids who may just have a speech disorder. If a child is having a hard time with these words, but yet have others, it should be a red flag that something more is going on.

Now Gestalt language is when a child uses complete phrases or sentences, with no recognition of the individual words in it. According to those who initially diagnosed Zach, his use of whole sentences and phrases ("Wake up!","Oh no, what did you do?" , "Thank You") prior to his regression, although used at appropriate times, may have been Gestalt, meaning, he didn't understand the individual meaning of the words, but got the overall concept of the phrase. Sort of like the whole is greater than the sum of its parts. Kids on the spectrum have a higher tendency to learn this way.

Gestalt language acquisition does not just develop in persons with autism. It’s not just short cut in language. Gestalt language acquisition comes from gestalt thinking or gestalt processing. One way of to describe it is the thought process is like thinking in pictures. Persons with autism think and learn differently. From BrightTots

Scripting is almost like a combination of echolalia and gestalt language. Scripting is a lot like it sounds - reciting lines from movies, books, television, overheard conversations. Some people say that it is a self stimulatory behavior, used in times of high stress for a child who knows they are expected to be verbal. Some say that they have noticed the occasional child will use certain scripts to express themselves about something they are feeling or thinking that they have no other way to express. Zach has not done this to date.

What does Zach say? Well, he has a vocabulary of around 50 words, if I am to hazard a guess. However, he still is very quiet. He will speak spontaneously, just not often. I teeter on whether this is autism, or his personality. He is just not that in-your-face sort of kid (ahem, Sophie any one??), more laid back like his father. The autism just seems to emphasize this about him.

As much as he is quiet, and a possible a gestalt thinker, he is interested in more than the big picture. Lately, he has been fascinated with letters and all things Leap Frog. Using the knowledge of the way Zach may learn from the previous explanation, we have given him access to a LeapFrog video called the Letter Factory, and we have brought out an old LeapFrog toy that Uncle Mark got for Sophia a few years back called Word Launch. These products have been great in getting Zach to learn his letters! But how and why? First off and most importantly, Zach is fascinated with both of these items. We actually use the Word Launch game as a reinforcer during is in home therapy sessions. Now, Zach gets overwhelmed by choices. He has a problem scanning fields, especially with many items in the field (such as a keyboard). The Word Launch game has individual pieces, one for each letter. We can pull out a subset of the alphabet and have him have him make choices from a smaller sample space while playing a game. This does mean that someone has to be there to help him play the game. Guess what? Zach knows this. He is learning he has to rely on other people to achieve what he wants. For the first time ever, Zach loves therapy. He embraces his therapist as never before, even the newest one who started roughly a month ago. These therapists play this game with him. This game isn't just academic, teaching letters, it has also managed to teach a social lesson, too. The combination of these these two items has been a wonderful experience for us. Some would say to us, where is the ABA in all of this? No discrete trials bombarding the kid with flashcards? "Aha" you might say - "ABA isn't necessaryl. "

A note from the BCBA:

I probed receptive ("where is the ___?" And expressive "what's this?" Letter identification with capital letters. Zachary was able to receptively and expressively identify capital letters with 100% accuracy.

A probe to start, continue on with what we are doing for now, rerun the probes, perhaps create a few programs to expand upon what we are figuring out works for Zach. But we have a baseline now, a mark in the sand, to say this is where he is at, and it is well documented and can be studied, altered, and regraded periodically. This is the reason I like ABA - DATA! Some progress events are so obvious that you don't need to get them written down to see the change (e.g. He is peeing on the potty and no accidents!) But some things aren't as obvious, and you may not recognize the changes being made through all the fog of what you are working on, unless you occasionally stick your head up and draw a hash mark.

Isn't a big reason for the written word in the first place just a way to remember what happened with as much detail and truth still in tact?

Zach also is doing some intraverbals - we are making use of his ability to remember phrases and have him fill in the blank. If you are to say to Zach: "A 'B' says _____" he will respond with "buh". He is learning some phonics from these games. I am not sure how useful phonics will be to Zach, but it does coincide with what a normal curriculum for a typical kid is, and will help him to meet that goal if he is tested against it. *sigh* Yes, I am thinking we have to teach to the test if we want Zach to show academic progress one day, even though it might not be the true test of his knowledge, and certainly not a test of how he learns.

So my wishes are coming true - not that Zach is becoming more verbal, literate, or just learning his ABC's. I am starting to get a feel for how Zach's mind works, so I can teach him, communicate with him, one day to maybe help him express his love to us, and respond to him in a way that lets him know that we love him.

If you know a kid with autism, than you just know that one. They all vary so much. One single thing does not work for all, so it is up to us to try and see what does. This method is helping Zach, but may be of no use to another. The mystery of autism will continue, but the mystery of Zach has had a bite taken out of it.

Here (hear??) we go

Woke up this morning to a happy little boy playing in his room.  I rolled over to see my husband in bed with me. "Let's let him play in his room this morning for as long as he wants."  I said.  Steve concurred.  Steve got up only to be replaced by Sophia.  As she hopped in with me, I lay there with my eyes closed thinking about all the freaky dreams I have been having.  I then asked Steve, "He can't have anything, right?  Not even water?"  "Nope"

We kept the little bugger up as late as we could in anticipation that he would sleep in.  The surgery isn't until 10:30, although they want us there at 9:30.   I am pretty sure Steve kept him up until 11 last night, but the little bugger still managed to wake at 7:30. 

Sophia asked me when I was going to get up.  I dread getting up.  I dread this oh so simple procedure that is about to take place.  She asks if she can open the shades, she pulls on the roller shade and I realize it is all the way extended to which she replies:  "Can you fix the shade so I can open it?"  I tell her to give it one more try and 'snap' it rolls up, all the way to the top, only to reveal that on this April 27th morning (yes, it is almost May good folks) that it is snowing in Syracuse, New York.  Normally, this would unnerve me as a freak natural occurrence and I would be spooked that it was setting a bad tone for what was to come.  But, alas, we live in Syracuse NY, and we pretty much come to expect that it could snow in July around here.  However, waking up in bed with my husband still next to me at 7:15 on a weekday, that is what I call a true freakish moment. 

It's eight o'clock now, Zach has moved into the therapy room and is playing and babbling and singing.  He still hasn't come looking for me.  I heard him call out "wake up" but don't know if that was directed at me or not.  I am still in bed, staring out the window at the snow, typing on this ol' laptop.

I think about the freaky dream I had last night - where I was at a swim meet, about to do an event that I had never done before.  Those of you who don't know me, which is many, probably don't know that I am not a particularly good swimmer (make that pretty bad) and that I am pretty nervous around deep water.  In fact, I failed swimming lessons in the 2nd grade. Back to the dream, I was belly crawling around the pool, watching the other swimmers, trying to notice their every move so that I could replicate it.  In my dream I was not afraid of the deep water, and was actually building up confidence as I crawled around the pool, watching the other swimmers, thinking "I can take them".  Now when I think about me at a swim meet, in a bathing suit in my current unfit 40 self in front of the general public, building up confidence just doesn't seem like it would be likely. I'll let all you dream interpretation enthusiasts work this one out and get back to me.  The dream abruptly stopped, as most of my dreams have been lately.  None of them have been pleasant.  All of them have been so unusual, more than my dreams ever were before.  All of them have left me uncomfortable.

I used to have those flying dreams - anybody out there have them?  I remember as a child, I had them so frequently, a few as I was growing up, and a rare hit here and there as an adult.  What I would do to conquer the skies again in my dreams.  As much as I have only a cursory knowledge of dream theory,  I knew these dreams were positive, that I was feeling good about myself and my life.  Of course, I was somewhat of a realist in my flying dreams, I never made it up on the first hop, it would usually take 3 or 4 times to get the appropriate loft, and then once up and I was able to determine my navigation techniques, there were those pesky power  and phone lines that I would have to avoid.  I can recall feeling in flight nothing like an airplane, yes more like a kite, at the whimsy of the air currents, not totally in control, but able to span a distance like a glider.   Oh, how I would love to have the strength and content feeling to have such a dream again.  My dreams seem to all be about frenzy, nonsense, fear, my past colliding with my future.  Crazy.

The snow was still coming down as we came back from the surgery center.  Tubes were in, both ears were completely clogged with a viscous mucus.  The ABR indicated all OK.  They were unable to conduct an OAE (Otoacoustic Emissions test) because of all the gunk oozing from the poor little guys ears.  He took a bit to come out of anesthesia, but uttered only a peep when the nurse took out his IV.  He readily took the cup of apple juice and ate some crackers on the ride home.  We cuddled for a bit, and then he went to town eating two waffles, then a hot dog and an apple for lunch.  He played a bit, and then I saw that look.  You know the one.  I placed him on the potty, he did his business (#1 and #2) and we got him out of his pajamas and into comfy clothes.  He's playing an online Fisher Price alphabet game on my laptop now.  There is some gunk coming from his ears.  And here we are.

Tubing

Tomorrow Zach gets tubes in his ears.  This will supposedly help with the constant ear infections.  Perhaps, even though a long shot, will help with hearing that may be impaired.  I want to give him every advantage I can.  I hope this one makes a difference.  I know lots of families who had children with tubes, I know it is a fairly common procedure.  But, alas, I am still nervous.  I cannot tell him what is about to happen.  He has no receptive language.  I don't want him to be scared.  How will he not be?

The procedure for tubes takes 15 minutes from what I understand.  Nice and quick.  Unfortunately, we are also having other stuff done - particularly the ABR hearing screening we have mentioned before.  ABR stands for auditory brain response. The ABR involves measuring brainwaves that arise when the auditory system is stimulated. A positve ABR result (recordable brainwaves in response to sound) only implies that the auditory mechanisms are intact (even if behavorial responses during audiometric testing is absent).  Don't want to think about the negative side to this coin right now.  This part of the procedure will take about an hour.    All of this is done under anesthesia.  I know this will be very hard for me.    

So there you have it.  I will let you all know how it goes.  Off to bite my nails or eat chocolate ice cream or something.

I am as cold as ice

It struck me the other day when posting on facebook - how much a part of Zach's autism am I?

In recognition of "April is Autism Awareness Month", I have decided to assault my many friends with facts about autism to drive them to the point of unfriending me.  (By the way - when did friend become a verb?)  Video killed the radio star, and email/facebook/texting/twitting, I mean tweeting, killed the little grammar we had left in American society.   In my Facebook posts, I have posted things about prevalence rates and gender differences.  Then I posted about the original theories of autism, namely "Refrigerator Mother" syndrome. 

First, I felt a sadness for all those mothers who loved their children so much, were desperately seeking help only to be told it was their own fault.  Holy crow.  Can you imagine?  I mean seriously, this would likely have been the end of me.  Blame my genes, but my deliberate or involuntary actions?   All you mothers out there, with children of special needs or not, think about being blamed for your children's vices.  How come this theory lasted so long and why was it so easy for us to believe in?

A little background for those who didn't see my facebook post:

From the 1950s though the 1970s, the prevailing medical belief was that autism resulted from inadequate parenting. "Experts" blamed autism specifically on a maternal lack of affection. (A theory that would endure well into the 1990s) This theory is still held by those who believe in "psychogenic disease" that associate mental disease with emotional conflict.

The term "refrigerator mother" was coined by Leo Kanner, an early autism researcher. Kanner, and a few predecessors including Freud, noticed that parents appeared to be cold of children with what would now be called autism, thus blamed the bonding thing.  I kind of want to smack the guy, for obvious reasons, but I also want to thank him for recognizing the disorder was different than the previously believed mental illness/retardation mix it was attributed to. 

Of all the circumstances that Zach's autism has brought to us, I realize that the dichotomy of human behavior is the most frequent theme.  There is good and bad in everyone; in our typical kids, in our ASD kids, in people in general.  The tilting point, more often than not, a balance, is what makes the difference in whether that person does more harm than good in this world.  So some people would say I should be pissed at this Kanner dude, whom I have never met, and who has likely caused some harm in his initial observations of these poor mothers, although not me specifically. 

What exactly did Dr. Kanner observe?  Was it that Mom didn't smile or Dad didn't feel the need to have idle banter about sports amidst the time they spent asking for help?  May it have been that Mom and/or Dad might have the same disorder?  Anyone who has a child with such a disorder isn't exactly going to be cracking jokes and loving life when trying to get help, any empathy while doing the analysis? (Empathy/doctors: please discuss.)  But it isn't the theory that bothers me,  it's the fact that so many people stood aside complacent about the theory.  It was so easy for us to blame the parents.

A responder to my facebook post wrote something I found salient:

Such findings always strike me as further proof that people never really give up on clinging to superstition. When superstition falls out of favor they call it divine retribution. When that falls from grace they get science to provide the justification. People want to blame someone because they don't want to believe that such things could happen to them. Diseases and conditions of the mind seem most at risk for such persecution.

I read an article about the Mommy Mafia on cnn.com recently and realized, that us moms can be brutal to one another about passing judgment on mothering abilities.  Why is it so easy for us to do this?  I can remember with Sophia, our lovely "high spirited" daughter, having friends whose children were more "appropriate" smile at me and frequently pass a word of advice on what I could be doing better.  When several of these parents went on to have other children more "spirited" like Sophia, I couldn't help but smile to myself.  And yes, I occasionally rubbed it in a bit.

Nurture and nature.  We just love to blame some things on nurture that are nature.  And vice versa.  Sometimes we want to accept the nature part of things to the point of lack of responsibility.  We just do not want to believe we can make a difference with the circumstances presented to us. However, sometimes we don't know how to or are too worn out, either way: we need help.

My behavioral approach to Zach supports this theory.  It does seem to say that my actions with my son can make a difference with his behavior.  They did not cause his behavior's intrinsic nature.  I try to work with him, but I am no specialist or expert in this. I learn, people tell me I am "so smart" in fact about all this, but it is a lot of work, I get tired.  I need help.  I am not responsible for the innate circumstance we have in our life, it could have happened (and is with current incidence rates of 1out of 91 children) to anyone.  I see others who take different approaches, I wonder what guided them down their paths to their decisions.  I know a few things about them for sure: they care, they try, and they are tired.  No chilling appliance parents here. 

Thank you Dr. Kanner for realizing there was something more to this than straight mental illness.  Thank you Dr. Kanner for realizing some of these children were cognitively capable.  Thank you Dr. Kanner for giving a theory that people should have contemplated and criticized more readily.  Shame on the rest of us for wanting to believe this was something that could never have happened to us and that there is nothing we can do to change outcomes.

Just another day

Feeling kind of blue today.  It was a hot one by Syracuse's standards, managing to get over 80 degrees.  I was inside trying to get through the household chores.  I didn't even come close.  I made several phone calls, and got several answering devices in return.  One phone call particularly has me upset - to Zach's pediatrician.  I have asked him to look over what the integrative pediatrician recommended for testing - she wants to test for serum ferritin levels (low iron has been show ton increase inattentiveness) , carnitine and zinc (carintine deficiency can cause brain abnormalities and vomiting and zinc deficiencies can cause motor issues, both deficits are common to kids on the spectrum), serum Vitamin D level (highly probably for most kids on the spectrum and anyone living in Syracuse for sure), and genetic testing for MTHFR deficiency.  I also wanted him to write me a script for orthotics as Zach's PT requested and sent him a letter, substantiating the request. Nothing.  One week had passed, so I made a call to the office.  Now over a day has passed, and still no response.    If he doesn't want to run the tests, than a quick reason why not would be OK with me.  I cannot for the life of my understand about why the orthotics might be a big deal.  No response?  Wow.  That's, like, so 3rd grade.  I think it is time for a new doctor who can act professionally.

These sorts of things weigh me down and for some reason, next thing you know I feel stuck in some sort of hole.  My thoughts go to feeling like nothing is working out and no one wants to help us. I hear stories from mothers going through similar things and how they were quick to deal with these things in such an intelligent, and firm manner.  For some reason this does not inspire me, I feel as though I don't have their strength and quick wit when dealing with situations, and instead I feel useless and incompetent.  Sprial spiral sprial, down down down.

So I am at BJs and I am checking out with two kids in tow and 45 minutes to get everything I need, get out, and get home, and prepare for the next therapy session.  As I go into the self checkout lane, a fellow approximately 10 years my junior gets in back of me.  As I go through self- checkout in my usual manner, scanning credit cards, packing the cart, dealing with kids, he looks at me and says "Multitasking, eh?".  I said:  "It's how I operate - the only way to get it all in."  To which he replied:  "Well, you are good at it!"

There is no way in the world that this man has any idea that he totally pulled my out of the abyss.  I am shocked that this simple compliment was able to lift my spirits so high that rather than spin out of control, as I was beginning to, I energetically got through the rest of my day on target. Not only that, but there was a special surprise in store for me.

A new itinerant therapist was in training this week with our current therapist.  I had been hearing in my head the sound of cash registers going off.  And then I heard some running around and the cheering.  Our primary therapist came down and indicated that Zach, in the middle of a discrete trial (where they work on a specific skill repetitively) said the word "pee pee".  Both therapists then whisked him off to the bathroom, where they got him on the potty, and yes, you got it - he peed in the potty!  WHOA!

Attended another resource fair and met some parents that I have only spoken to on the phone or email.  It was great to talk to one Mom who has 5 kids - 3 of them on the spectrum.  As I was discussing Zach and his new toileting success, I made my typical skeptical remark about "Not seeing that again likely anytime soon."  Well, she scolded me.  I told her I have heard the (not so positive) stories from other parents - and she reminded me that that was their stories and we have ours.  I realized I shouldn't devalue my son's potential - he doesn't have some of the issues other kids have.  Perhaps he will toilet train well, when we decide to try it again.  He has skills, he is cute, he smiles, he has some words. I am just always waiting for the other shoe to drop.   Is it my engineering training of looking at worst case scenarios?  Is it my upbringing, the way Mom made me overly cautious about life and playing it safe?  Is it life itself and how many unpleasant surprises we have had?   Is it my personality??   Probably yes to all of it.  I know I am not in control, but I do feel like I drive this vessel; I cannot determine what is going to come my way, be it clear calm waters or a hurricane, but I can choose which way to move my sail.

In the end, I think of the man from BJs.  And I get a warm and fuzzy.  I realize it is important to do this for others as well.  You just never know if you are the one to help pull someone out of their own personal abyss.

"Inclusion" as a slur

Sophia and I had dental appointments yesterday.  No cavities and rather simple cleanings, which I viewed as a little gift from up above since I have by no means been as fastidious about my dental care as I was in the past and Sophie with her sensory and fine motor skill issues has not exactly been the stellar student either. However, as much as the good news of the Morphet Girls of Camillus having solid bills of dental health, something so innocuous as a dental visit has put a cloud on my sky.

At the end of the appointment, after discussing thumb sucking with the hygienist, the dentist walked in to check me out.  As we discussed the thumb sucking, and he poo-pooed my concerns saying she will stop on her own and not to worry about it, I told him that I noticed that it is more socially acceptable to thumb suck than when I was a kid, and I was hoping for the social pressure to help break Sophia of the habit.  And then it happened.  His remark back to me was one simple word said in a contemptuous tone and partial eye roll:  "inclusion".

I said nothing back.  I was shocked.  He knows I have a son with autism.  I could not help but to interpret this remark to mean that bad behavior is associated with the fact that we now integrate children with special needs with typical children. Was I being too sensitive and not really getting what he said?  And then I thought how this father of 5 and his wife homeschool their children, and it seemed to me that my interpretation was likely correct.

I have ruminated on this incident for over 24 hours now.  I shared it with no one, not even Steve. 

I so wish that for my big mouth I would have been able to have an appropriate retort.  But the fact is, I still don't.  We do not have behavioral issues with Zach currently.  This is likely due to a combination of how his autism has manifested itself, and the efforts of his therapists and teachers and our family.  Having read a bit, spoken with other parents, and talked with our therapists, we are aware of how normal parenting techniques can backfire when parenting a child on the spectrum.  I try to be as preventative as possible in all my dealings with Zach.  But I also know a few things, more from Sophia.  Sophia is our spirited child, with little patience and lots of energy, demanding, who likes to test limits and push buttons.  There is nurture, and then there is nature. 

I do not feel that it is OK to allow bad behavior because a child is special needs.  I strongly believe that early intervention and addressing behavior problems appropriately is the key to making a difference in this area.  I always think of Temple Grandin and how she constantly reminds us to make sure our kids have manners - that this is almost more critical for kids with autism than typical kids.  She claims that being a child of the 50's helped her a great deal that way, when manners were more emphasized and taught in school settings.  Before it sounds like I am about to get all ugly on parents with kids with behavioral problems, let me say that I also know that parenting a child with special needs is just about the hardest job there is. 

I know I once was an education snob who thought that "those kids" would take away from the progress of the others.  I am ashamed that I thought this way for several reasons.  First of all, because it is factually wrong.  Secondly, as a Christian, because of the judgmental and selfish thinking behind it. Thirdly, because I was foolish enough to think "those kids" would not be mind one day.   I am not proud of the person I was. For some reason,  I recall a Boy Scout leader telling me a strategy they used to promote true leadership where they would put the slowest hiker first when on the trail. 

I am not a 100% inclusion sort of person.  I see where it works, and where it doesn't.  Inclusion done wrong, which it frequently is, especially with the tight budgets school districts have, doesn't come off good.  I have still a lot to learn about what inclusion should be.

In the meantime, I think of his remark.  I think that a grown well educated adult who has children and is an avid church goer can make this remark so easily to a parent of a special needs kid, then what of everyone else? 

In my pain I can only come up with one thought:  Education does not necessarily make a man less ignorant, nor does attending services make someone less of a sinner.

Easter: An update on Zach's skills as observed by Mom

(excerpts from mail to school psychologist)

Hope you had a good Easter.

We had some really nice surprises here. First off, Zach opened up wrapped presents (sent by terrific Babcia Morphet) with a verbal prompt of "open" given to him, which he echoed back verbally while tearing through the paper. He opened up 5 presents given to him this way. He enjoyed each present too - ranging from obvious favorites like a Thomas the Train coloring book and activity book, to chalk shaped like a bunny and a chick which he stared at trying to figure out what it was, to a book about a bunch of chicks called Jelly Bean which he sat in my lap and turned the pages, although he was not interested in hearing me read it.

Easter also gave us the opportunity to work on scanning skills in the form of seeking objects while outside.  He did a pretty good job on two different Easter egg hunts. He only picked up 5 eggs the first hunt, having to be directed to each egg, prompted to pick it up and then prompted again to put in the basket. The next day's hunt, I prompted him for a few eggs, and then he went and searched himself, and grabbed around 10 eggs completely on his own and put them in the basket without a prompt but with lots of praise, that is, until he was distracted by the neighbors kids in the backyard playing baseball. He then ran right over to their house and got in the middle of the game of pitch. Steve originally tried to yell for him to come back,but I went over and encouraged him to hang out. He ran back and forth and grabbed some balls and a bat and just investigated them - not really using them as designed, but definitely interested - my whole family was astounded.  I was thrilled.  He is interested in kids socially - likes the energy and excitement, but has no idea how to participate in a normal way.  We will work on this.

He was great for Easter church services - although his babbling is a little much for a quiet service - but was OK with the noisy one we had (lots of babies and kids).  We do not regularly attend services.  I find it difficult, since Sophia has a very difficult time sitting still or acting appropriate for our non charismatic services, plus the who knows what is going to happen with Zach.  It seems like I can barely be present to hear scripture read or that days sermon, and we are likely only disturbing others, so I have avoided it.  But I know that this isn't what I want for our family, so I have thought about what to do - and this is one time where I can say that we just need to do it and see what happens, and persevere through it.  Sophia is old enough that she can now attend the children's classes that they run for part of the service.  There is also a crying room if I need to give Zach a place he can have some space and make some noise.

After about a 10 day hiatus from wanting to use his fork - Zach seems to be back on track and I have noticed he drinks from a cup really well - often showing off using one hand.    We have lost some of our sit down family meals lately because of schedule issues, and I have noticed that Zach and Sophia will get up from the table prior to being excused and wander around and play.  Like the church thing, I don't think we need to formally address this as much as we need to practice it.


He is going through a bit of an attachment issue with me - if he leaves a room and comes back and doesn't find me where I was when he left, (as he did at his Grandma's house on Easter) we get instantaneous waterworks, calmed only by my presence and great big hug. I have noticed that if I am not in the kitchen when our one itinerant therapist ends her session at the house, he sometimes shows this same behavior. 

We are also working on some self help skills - like getting dressed and disrobing.  We're starting with some of the easy stuff -shoes and socks.  Getting him to take off his socks the right way is a bit problematic, but he is trying.  The OT at school was working on showing him to stick his thumb in at the top of the sock, but I am afraid that Zach really loves to just pull it off at the toe. 

All in all, I feel like he is at a new stage right now - he is really seeming to like his sessions with his home therapist more than ever, and I think his receptive language is gaining ground - in fact, I think we are likely to see a lot of progress in this area right now. I have asked him some 1-step directions, and he has don't them without a visual prompt and that really surprised me! (Pull down pants, take off sock, sit down, get the ball, where is your milk?)

He loves a Leap Frog game that Uncle Mark had sent a few years back for Sophia.  We use it to keep him energized and motivated during his home sessions.  Although Zach has given us little indication that he can identify more than a few letters let alone any more advanced skills like spelling words, etc, he loves this game that is all about making words up out of letters.   In fact, the Easter bunny decided that Zach should try another Leap Frog product - sort of like a computer on your TV, called ClickStart My First Computer.  We haven't purchased any games for it yet, but are playing the basic game that came with it.  So far, Sophia really loves to play with it, and Zach likes to watch.  I keep on thinking, it will happen in its own time.

Back to the motor skills - Zach loves to swing on a regular swing.  I push him so high and am terrified that he will let go but he never does, even after swinging for 15 minutes.  He likes the playground equipment, but does better when his sister or other familiar children are around.  He is alternating feet when even going up a ladder now which surprised me, and can handle the rock wall on  our playset like a pro.  Ball handling is still an issue.  I try to play catch but he doesn't seem to get the reciprocal nature of the game.  Wish we had a young man who could be willing to help us out that way and model it for him - he seems particularly enamored with young men and boys.


Finally - Zach is really captivated by Goodnight Moon. I have been trying to get him to search and point to the mouse as it moves around the room from page to page.  I wonder if he is familiar with it because he remembers the numerous times I read it to him pre-regression.  I have always loved that book. 

Sophia and Zach had a wonderful Easter - the weather was beautiful, there were presents and treats, the family got together, we even took a friend of Sophia and her mother to church with us, which was pleasant.  I see the buds starting on the trees and I think of Zach.  Here hoping to lots of budding this spring.

Faith, A Book Review of "Autism & Alleluias" by Kathleen Deyer Bolduc

This week marks Holy Week for Christians. In my family we have many traditions that we celebrate during this period of Lent. We are about to embark on one such tradition this evening: the grinding of the horseradish. Some people try to pass it off as something from our Polish heritage.  Don't bother Googling it, as much as I can't prove it, I am quite sure it's something a great Uncle made up to get us all together - and the men a chance to drink Crown Royal. 

My faith has certainly been tested since we first realized that Zach was on the autism spectrum disorder. I am sorry to say that it is shaky at best throughout all this. But here is the odd thing, even when so many things that logically tell me there can be no way that an almighty God exists, let alone a loving one, I can't seem to shake it; I still believe.

I was recently asked to review a book, Autism & Alleluias,  written by Kathleen Deyer Bolduc, mother to a child with autism. Initially, I feared a sugary sweet story of a mother thanking God for a son with a disability. I have read mothers who speak this way and I just cannot, for the life of me, relate. Some stories I have read may be inspirational, but talk about children who have recovered or are near recovered (lost their diagnosis), and these are nice, but I cannot relate. We are still in the throes of it.

First off, let me say that as an overwhelmed parent, I appreciated that  I could read this book within our time constraints, as each chapter reads almost like a devotional, with a piece of scripture to contemplate, and Kathleen's own experience with that scripture in her experiences with Joel.

Kathleen's son, Joel, has not recovered. He is not a savant. He is not brilliant. There are good days, there are bad days. There are difficulties that a parent of a typical child could never understand.  There are dreams that they do strive for, but alas, realize are unattainable, they let them pass, and move on to those things they can attain. In the process Kathleen, Joel, and the rest of the family, keep on moving forward, managing through their struggles, being surprised by insight that only Joel could provide, and being blessed by strangers whose steadfast support of Joel turn them, for all intents and purposes, from plain caregivers to additional family members. At every turn, the smooth and easy to the muddy and thick, Kathleen manages to find God.

A summary from her publisher:

Most everyone knows a family that has been affected by autism. What is the role that faith plays in helping families cope? In this series of slice-of-life vignettes, God's grace glimmers through as Joel, an intellectually challenged young adult with autism, shares his gifts with those who love him.

If you are a mother of a child on the spectrum, or with a disability of other sorts, you will likely relate to the  intermingling of sunshine moments and rainy days, told with the frustration, yet without the bitterness, something, my blog readers know that I have not been blessed with, but I strive for.  In one vignette, she discusses the families attempt at training a dog with Joel in mind.  I marveled at how she discussed that although not the trained service dog specimen she was hoping for, he was in fact, the perfect dog for her son. She only mildly expresses her experience of spending a lot of money to a trainer, who once paid up front, no longer held up his end of the bargain.  With such poise in handling these situations, and ease at which she discusses hard to discuss issues, it was of little surprise to me to find out that Kathleen works in the field of disability ministry and has published other books: His Name is Joel: Searching for God in a Son's Disability (1999), and A Place Called Acceptance: Ministry with Families of Children with Disabilities (2001).

This story is not inspirational in the conventional sense that the Bolduc family's faith yields to Joel's healing or over the top miraculous deeds.  It is inspirational in that in times of struggle or fear, moments of beauty and clarity appear (perhaps little mini miracles), often from Joel himself. Could these moments be the true grace of God?   We, too, have had these moments in our short span with autism.  They are what help me to sustain my faith.

While I am a Christian, and this story is told from the perspective of a Christian, I was happy to see that the book tells of an angel sent to the family in Muslim form.  We too have had such a Muslim presence in our lives.  I think our story will warrant a post of its own.  I  found the book not to limit itself to a particular religious perspective, but a common theme of faith which I really appreciated as someone who respects people of all faiths. 

Kathleen will be having a free webinar titled "A Place Called Acceptance" which is scheduled for April 8 at 2:00 p.m. She will be joined by Bill Gaventa (editor of the Journal of Religion, Disability, and Health) and Ginny Thornbugh, the program director for the Interfaith Initiative of the American Association of People with Disabilities. If you are interested in attending, they ask that you register.