Night and Day

My boyz are as different as night and day.  We've all heard the expression ad nauseum "If you've met one person with autism, you've met one person with autism." but even the most jaded person in the world would think that two boyz from the same gene pool, raised in the same environment with the same diagnosis would have more things in common than not in common.

I'm here to provide evidence to the contrary.

Both my boys have communication problems.  Joe didn't talk at all until he was almost 3 and then started spouting words and phrases from books at a phenomenal pace although comprehension is still an issue at 18.  Alan, on the other hand, seemed to develop typically until he was about 2 and then rapidly regressed and seemed to stagnate.  Grrrrr  Just when you think you have this autism figured out, the second one is completely different from the first. 

What was difficult for Joe (potty training) happened almost overnight with Alan.

What worked so well for Joe (ABA) had almost no effect on Alan -- he just ritualized things. 

Alan goes barefoot every chance he gets (even in this picture from last December when there is still ice in the raingauge) but Joe puts on his sandals every time he needs to step on the grass because of his sensitivity issues.

Joe always has something in his hands in his toddler pictures (usually several somethings) but Alan always wanted his hands free to climb.

Joe has always been sound sensitive.  He hated fire alarms at school, he used to wear noise muffling headphones for watching fireworks (and we weren't that close) and he still wears them for cutting the grass.  Alan likes making the most piercing noises known to man but doesn't seem to care what sort of noises are in the environment.

Even for things that they both loved (their wooden toy trains) they played completely differently.  Joe would carry around a handful most of the time but when he played trains, it was to run them along the track stimming out of the corner of his eye.  Alan likes to make very long continuous trains and crash them off a high surface.

Joe is unbelievably gentle for a boy.  He doesn't like violence and has only lashed out physically a handful of times.  Alan came out of the crib headbutting.  I have a very vivid memory of telling him no about something when he was barely walking and him turning around and headbutting Joe in the back.


They both love swimming, but Alan loves the ocean and waves and Joe is skittish of critters and prefers swimming pools and his mask.

Joe used echolalia and scripting to start talking.  He would take a phrase he had heard in a book or a movie and apply it to a different situation to come up with an expression that was most times appropriate.  Alan just scripts for the stim.

Alan is a complete daredevil and climbs to the top of everything while Joe is a little bit scared of heights.

Alan has been known to elope on more than one occasion (going so far as to attempt to walk to his aunt's house 5 miles away), but Joe just leaves the situation and then comes back when he has calmed down.

Joe is a complete pack rat while Alan loves to "clean up" and has thrown out numerous things we then had to fetch out of the trash including silverware and unwanted toys.

Joe has always loved crafts of all sorts, but paper/pencil activities are torture for Alan.

Joe always slept like the dead but Alan had a more difficult time falling asleep and tended to wake up at first light.  This has improved since he has become a teenager but he is still our usual weekend alarm clock.  Trust me, it is impossible to sleep through a 160 lb. kid back flipping out of bed on the floor above you!

Alan is very motivated by "task completion".  At school, they frequently use finishing a job as the reward for doing the job itself.  We joke that this is the reason Alan gets in the ocean and starts swimming for the horizon -- he has to get to the other side!  Joe on the other hand, loves to start projects ("I am going to type all the numbers from 1 to 1,000,000.") and a few days later he loses his motivation. 

So for those people out there that do not like the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) changes to the definition of autism, I would like to point out that I think in many ways this will be more accurate.  Under the DSM-IV, both my boyz are "PDD-NOS".  This does not even begin to cover their complex differences.  At least with DSM-5 they will be level 1 (Joe) and level 3 (Alan).

Rob Growski of Lost and Tired said, "The most dangerous mistake in Autism is generalization."  He's got that right!

Theme Thursday: Link to an old post

I’ve always wanted to participate in one of the clever themed blog hops I have seen but have never felt like I have anything interesting to contribute and I try to avoid writing when I have nothing new or interesting to say.  Of course it is eminently possible that I usually have nothing new or interesting to say, but we will pretend for a moment that’s not the case!


But this week the “theme” for Theme Thursday is to link to an old post.  Now those I have!



I decided to link to one of my favorites Spotlighting Joe's Creativity.  He is an incredibly talented young man.  

And wishing a Happy Independence Day to all the American readers out there. 

The second born

Alan was soooooooo different from Joe as a baby.  He was cuddly, social and just fun.  I thought then that most of it was because I was a more relaxed mom and I am sure that was a significant part, but I also believe he was just more typical.

He was however a huge baby.  He was 10 lb. 7 oz. and 22" long and he was 2 days early!  I had four different people (including the nurse at our parenting class) ask me if I was having twins.  That was very hard on Mom’s morale!  

In fairness to the nurse (and the other three peeps) I did gain 49 lbs. that I would claim.  I might have gained more but I was terrified to get on the scale at the end.

Alan always had a twisted foot.  It is even visible in his crib.  And when he started to crawl, his foot was always getting in the way.  I think the poor guy was just cramped in the womb and his foot grew that way.  A little more guilt for mom.  Even with his twisted foot, he walked ran at 10 months although his gait is off even today.

In many ways Alan was the classic second child (at least in our family).  He was resourceful, opinionated, and mischievous.  

In our 1999 Christmas letter I said "Alan is 15 months old and already has about 20 words so hopefully we won't have any language difficulties this time around."  Ha!  Mom was so delusional!

Of course by the 2000 letter, things were different. 
Unfortunately, Alan is not talking much and just got tested and approved for First Steps (the program which helped Joe get his speech and language therapy before age 3).  Sigh.  Here we go again.  If there was one lottery in life we would have preferred NOT to win it would be the "All our kids need Special Education for Speech and Language difficulties."

          
And yet when I went looking for pictures for this post I found dozens of pictures of Alan staring intently at other people (usually children) rather than at whoever had the camera.  I didn't have that with Joe.  I can't imagine I culled them all out so I think Joe just wasn't as interested in other kids as Alan was.

The differences as they have grown and developed have been just as noticeable.  Of course in the "mom guilt" column I have the extensive language journal I compiled for Joe and with Alan I could only look in the photo album and old Christmas letters and hope I was interpreting things correctly.

Next up:

Comparing and contrasting the two … because for two children from the same genetic pool with the same diagnosis, these boyz are as different as night and day!





 

Little Joe

Looking back on Joe as an infant, it is easy to see he had autism.  Of course DH and I had very limited experience with babies so to us, he was just "Joe" and if we thought anything was wrong, we figured it was because we didn't know how to handle a baby.

3 trains in one hand - that is a unique skill.

But Joe did not like cuddling much.  He never imitated noises and if you would try to imitate his noises, he would get quiet and listen to you but not make his own.  He ALWAYS had at least two things in his hands at all times.

He would make himself go rigid when he was angry and he went to sleep best by being left alone.  Of course, unlike many children with infant onset autism, Joe also slept like a rock.  He slept through the night at 2.5 months and before 4 months he was sleeping 12 hours straight every night.

We were in a playgroup and I noticed that all the other kids were starting to talk at around 10 - 18 months, but not Joe.  Nor was he pointing.  I started pouring through What to Expect the First Year and couldn't find anything about late talking children except autism.  The description in those days was quite narrow and of course, Joe didn't sit in the corner and rock, he didn't toe walk and he wasn't excessively flappy.  As a matter of fact, my incredibly non-autistic niece did much more toe walking and flapping than Joe!

At 18 months, DH and I were assured by everyone and their pediatrician that Joe would be talking by age 2 and to just "Give it time. Boys take longer."

Needless to say at 2 Joe still wasn't talking.  As a matter of fact, he had about 15 words when he was evaluated by a speech therapist shortly after turning 2 and 5 of them were letters of the alphabet.  He had briefly said "see" and sort of waved in a direction (although still not pointing) but "see" degenerated into "gee" which degenerated into "guy".  Needless to say the SLP that First Steps provided was not impressed and she was the first one that said "PDD-NOS" to us (of course with all the necessary disclaimers "I'm not a doctor", "You really need to get him evaluated", etc.) 

We loathed that first speech therapist for more reasons than just the fact that she was the first one to say "autism" to us.  She had a very hesitant way of speaking, constantly apologizing and never finishing her sentences, and DH and I just looked at her and at each other and thought, "This woman is going to teach our son to talk?"

After her we did get a wonderful speech therapist that we loved and Joe loved, but he still didn't talk.  He actually deteriorated further to where he only had 10 real words, so we finally bit the bullet and took him to a neurologist.  

As with the speech therapist we managed to get the worst neurologist in town.  He had hideous eye contact and stupid boring toys and then said that Joe had poor eye contact and wasn't interested in toys.  Well duh!

Of course the sad thing was that he was correct in his diagnosis.  We were still in massive a bit of denial but we did enroll Joe in a special needs preschool and sign up for a parenting course for parents of autistics.  Meanwhile I read everything I could get my hands on. 

Sometime that fall I read Let Me Hear Your Voice by Catherine Maurice.  The book was incredibly inspirational and really motivated me to get going on ABA.  At that time ABA was not being funded at all through the schools so we were looking at privately paying.  Needless to say, that can get pretty expensive pretty quick so we decided to do something we jokingly referred to as "high chair therapy".  We could still cram Joe into a high chair and it was an easy way to restrain him.  We got a handful of favorite snacks and tried to get him to imitate us or say certain things in exchange for a snack.  

He resisted at first -- big surprise!  In one of the early sessions, DH was working with him and Joe grabbed DH by the cheeks and pulled him in close as though to get his attention.  Then he smacked DH upside the head as hard as his little two year old arm could hit.  As DH said, "He might not have been talking, but he got his point across perfectly!"

Clutching foam letters & numbers at Discovery Zone.

We kept putting him in the high chair multiple times a day for several weeks and eventually this did turn out to be our breakthrough.  He went from 10 words to about 100 in the span of a week.  His pronunciation was still atrocious, but we were over the moon.

About six months after this, we started our home ABA program.  We were privately paying for it so we only did it for about 10 hours a week.  But this was the jackpot.  Joe could have been the poster child for ABA.  

His preschool teacher (whom we didn't tell about the program) stopped me one day as I was dropping him off and talked my ear off about all the amazing progress Joe had made during summer school that summer.  Um, yeah, that isn't to your credit that is due to the fabulous paras we have!  We did tell her at that point though that we had been doing ABA and she helped us to get partially reimbursed by the school district.

ABA was Joe's primary method of learning for a year or more.  One para taught him most of his prepositions in one afternoon by having him get "on" the table, "under" the table, etc.  It was fun for him and yet incredibly educational.  Another taught him his colors in exchange for her French fries.

And of course, DH and I learned so many "foolproof" ways to deal with autistic children that we couldn't fail when we had a second child with the exact same diagnosis, now could we?!?!?!

Driving Julie Crazy

Someone once gave me a small plaque that said "Whoever said you only go around once in life, never had carpool duty."  

The funny thing is, I didn't really mind carpool duty most of the time.  When Joe was in grade school we found another family with whom we meshed perfectly.  I didn't mind driving in the morning, but really did not like waiting in the after school carpool line.  The other mom didn't like getting up in the morning but didn't mind the after school drive.  It was a good fit.  We continued to carpool through two kids each and two schools and it always worked out well.

Unfortunately not all carpooling is so pleasant.  And when you throw special needs into the equation, things can get VERY interesting!

I had the kid that wanted to listen to his choice of music in the morning.  Sorry, kid, you want a happy driver and I get very edgy when I don't have my tunes.

I had the time that Alan was going to school a half hour away from home (and then I had to drop Joe off) before I could go home.  Naturally, as soon as I pulled into the school parking lot, Alan sprayed his breakfast all over the back seat.  Yuck!!

I had the little girl who would only listen to certain songs (and I had a limited number of them on my CDs).  I got to hear Lady Gaga's Just Dance song four times one morning because that was how long it took to get to school.  Thank goodness that was a close school!

I had the child wearing so much scented body lotion, I felt like I was attempting to walk through the department store perfume department.  Have I mentioned that I'm very olfactory sensitive??
  
I had the time that a police officer pulled me over and I was so happy that I had FOUR children with varying degrees of autism that were all sitting quietly and correctly wearing their seat belts that in never occurred to me that I might get a ticket.  He did give me one for "improper lane usage" (I got in the turn lane a little before it technically started) and it was all I could do not to ask him who pissed in his Cheerios that morning.

I had the child that used to insult Alan (although never when I was driving).  

I had the kid that unbuckled himself and leaned over the back of my seat to try to turn off my radio because he was going through a "silence" phase.

I had the time Alan's OCD required him to jump in and out of the open car door at least five times before he would get in or out to stay.  Naturally the other ASD boy we were driving decided he would do the same thing.

Then there was the time Alan sat ON another kid.  Luckily he had a sister who was at a similar functioning level and he just calmly said, "Alan, you need to get up."  He repeated himself several times but didn't get angry or upset.

Of course when Alan tried that with another boy, he shoved Alan out the door.

Nowadays I do a lot less driving of Joe so it is just Alan.  Camp started this week so I have been dealing with the afternoon parking lot crazies.  It is probably worse for me this year because I have a new car.  I am so worried I will end up like this!

Between buses that do not slow down when going through VERY narrow openings to the nutty parents and the pokey kids, it is enough to make me wonder if a medicine increase for the summer is in order.  That would be mine, not Alan's.

I'm in over my head

This is (unfortunately) a techie post.  Apparently Google is doing away with Google Reader.  So if you are a Google Blogger (which I am) and that is the way you follow your blogs (which I do) you won't be able to do this in a couple of weeks.  

Great.

It took me 6 months to figure out how this darn blogging thing works -- and I still can't "grab a button" or some of the other things people talk about so casually!

Unfortunately this isn't a link, but the button to the right of the blog IS a link!

I've had several people tell me to use Bloglovin' since that seems to pretty basic and similar to Google Reader.  I've started using Bloglovin' and it isn't bad.  There are some differences but I suppose I will be able to figure them out.  I've added my Bloglovin' Widget and hopefully any of you that use Google Reader will choose to follow me over to Bloglovin'.

I'm sure there are about a gazillion things wrong in this short post but I had to try to let you know in case any of my readers were as clueless as I am.

So what's Alan been up to?

It may seem that I've been overly preoccupied with Joe lately.  In a big part, it has been because I see so much of him every day.  He is not working yet (please God, let that happen soon!) and therefore I think of him a lot.  My last few blogs were about Father's Day (and after all, Joe is the one who first made us parents) and the cats (and Joe was the one who really wanted both Misty and Diesel) and so I really haven't said much about Alan -- although I did arrange a funny collection of his climbing pictures on Facebook!

But Alan has actually been having a very good summer.  His first week was rough.  Despite having our back to school "conversation" that made me so happy, his first week of summer school had some difficult hellish afternoons.

A big part of it was just the different schedule.  He used to get home from school around 4 pm.  We eat early around here so he could have a snack and easily make it to dinner time.  But now he was getting home at 12:30.  Uh oh!  That didn't cut it.  He actually had to eat some healthy stuff or play or something to pass the time.  He spent the first four days sitting less than three feet away from me saying "medicine, medicine, medicine" until I thought I would lose it.

Unfortunately this picture wasn't zoomed.  This is how close he would sit to me -- ALL afternoon!

After Alan figured out the schedule, he has practically been my dream child.  He has been doing amazingly well at school, too.  He is really getting the hang of his school issued iPad with the communication program Go Talk Now.

When he wanted to watch his videos, he used to sit in front of the TV holding the DVD box in his hand and just bellow "downstairs" (when he was upstairs) and "blue ball" (when he was in the basement -- long story!)  Of course he never (or rarely) watched TV on the main floor.  Figures.

After a little work he now goes and gets his talker (what we call the school issued iPad) and proceeds to press the buttons so that he tells us what video he wants to watch -- and NO bellowing.  He is even doing this for the babysitter and when we had company over.  The best was when he tracked down both of us (on different occasions) when we were nowhere near the talker and handed it to us.  Success!!!!

And this is how he gets out of bed in the morning.

For those that do not know, Alan has apraxia (an oral motor planning problem) so that when he wants to say something, that isn't always what comes out of his mouth.  I knew this, but it has been sort of awe-inspiring to see the way the GTN has improved his ability to communicate and really cut down on the screaming.

Some very clear examples are the time he verbally asked for a cherry pop-tart but typed out blueberry on the talker.  I gave him the blueberry and he took it without a fuss.  If he had truly wanted the cherry, this would have been a time to pitch a fit, but he happily accepted the blueberry.

And just this afternoon he asked for The Star of Christmas DVD (a Veggie Tales movie) verbally, but I waited until he had typed in on the talker and what he really wanted to watch was Thomas' Ultimate Christmas.  So here were two very obvious times that would have caused stress in the house if we had listened to what he said but by using the talker, we bypassed the difficulty.

Now we just have to move him into abstract concepts.  OK, that might be a bit down the road.