An eye on the future

In two weeks, my "baby" starts high school.  Two weeks later he turns 15.  Where has the time gone?  It seems only yesterday that I was holding the most agreeable baby in the world (or so he seemed after his brother).  Now I am practically looking eye to eye with Alan.

Yet he is still so "young".  He still wants to play "This Little Piggy" and "Row, Row your Boat."  He still watches Veggie Tales and Thomas the Tank Engine.  But he had a "girlfriend" his last year of middle school.

He is such a little conundrum!!!

We have had wonderful successes lately.  Almost conversations and break-throughs in communication.  I've also had moments of abject terror that haven't been chronicled here where I fear for this young man's future.  He doesn't have a sibling that can care for him -- Joe can barely take care of himself -- so what is going to happen to him when DH and I are gone?

How will his new teacher and school turn out?  I know of almost no one that has gone to this school and I have no knowledge at all of his new teacher.

It is funny, but over the years, things have always worked out.

• When we wanted to put Joe in private school because of the horrible experience we were having in public school, DH got a promotion.  That school turned out to be one of the best moves we made.  
• When Joe was looking at high school and we couldn't find a private one that wanted him, we went back to our local public school and for the most part it was a rousing success. 
• When Alan needed a private school, the Catholic school system here opened up a center for autism a few miles from our home.
• When Alan's OCD became more than the private school could handle, we were past elementary school so we didn't have to fight with the school district why he wouldn't go back to that school.

So while this is not usually an overly religious blog, I am just going to say that I am trusting that God will take care of us yet again and this high school mine field we are facing will be successfully negotiated.

At least I am trying to trust and not let the terror win.

Truth in Advertising

I got Alan his first Autism t-shirt when he was pretty little.  We were going on vacation and I wanted a shirt for him to wear when we were in unfamiliar territory that identified him as having autism so that people could understand why he was acting the way he was acting! 

We were so happy with people's reactions, that we came home and ordered 3 or 4 more.  We've added several a couple times of year since then and prefer to dress him in them on the weekends.  We just got a new batch last week and I can't figure out my favorite.  I love them all!



Sometimes they just say "Autism Awareness" and sometimes they are more humorous.  Over the years we have had:

• I have autism and I am a good boy.  My mom and dad are doing the best they can.  Friendly smiles are appreciated, parenting advice is NOT.
• Why be normal?
• I'm not a brat, my genes just don't fit.
• I have autism.  Thanks for being patient with me.
• Autism:  Seeing the world from a different angle.
• Staring at me will not cure my autism.
• Just because I can't talk doesn't mean I don't understand.
• I have autism.  Please be nice to my mom.
• Warning:  Autism meltdown probability high.
• I'm not rude, hyper or spoiled.  I'm autistic.
• Stare if you must.  I'm ignoring you anyway.
• Eye contact is overrated.
• I have autism and I'm ignoring you.
• Autism:  Being different can be a good thing.
• I have autism and I think you are weird, too.

But my all time favorite is:

• Keep staring and it might cure my autism.  Then we can work on YOUR social skills.

Thank goodness for a sense of humor!

Some fantastic blogs

Some of you may have noticed that I haven't been blogging much of late.  Partially this is because life has just been a bit hectic and partially because I do not believe in writing if I don't have anything to say.  I do have about five posts started that I can't sit down and finish but ... someday!  That said, I've been reading some great blogs of late and I was thinking that this post of mine will just highlight a few of them.

One of the newest blogs I have added to my reading repertoire is Autism's Gadfly. This bloggist is a bit dry at times but unlike so many loud and outspoken autistic bloggers, he isn't thrilled with his autism and would "cure" it if such a thing became available.  He recently wrote Autism is Not a Disability but a Gift and a Superability?  I really think the "other" side of the primary autism debate is interesting to read.  So many autistics forget that many of the kiddos out there are not Aspies, but in fact severely autistic people who cannot communicate and are otherwise disabled by their autism.

Another new find is Live from the Wang and her post Ten Questions I WANT You To Ask About Autism.  While I don't agree with her answers 100% they are pretty funny and I liked number 10 so much it was almost worth the read just for that.  I also hate watching or reading "entertainment" about autism and had been thinking about a post on that very subject.  I might still do one ... someday!  I guess that brings my unfinished blog count to six ...

Another awesome blog is Love That Max.  I know a lot of my traffic has come from Ellen's weekly blog link up and I will be forever grateful for some of the wonderful friends I have made through her.  She recently did a post called What if William and Kate had a child with special needs?  It is definitely an interesting topic to ponder.

Then there is Kristi at Finding Ninee who so accurately summed up my opinions about righting a wrong.  There are no wrongs in this world. While I have been known to say that I wish I had stopped at one child because Alan so frequently overwhelms me, he is also my giggle box and cuddle bug and he has helped me to really appreciate how autism is truly a spectrum.  I would never right that "wrong". 

Over the years we have considered a service dog for Alan but came to the conclusion that it wasn't right for our family.  A great blog post by Jennifer Butler at Special Happens is Is a Service Dog Right for You? What to Consider Before Considering a Service Dog.  Reading through her checklist I know we made the right choice, but a second look at such a critical decision is never a bad thing.

And what would a list of favorite blogs be without Kerri at Undiagnosed but Okay?  Kerri really gets the almost magical connection we bloggists feel for so many "friends" that we have never met.

And that concludes my blog post which is basically just a summer reading list.  Happy reading!

Squirrel!!

Poor Joe had his wisdom teeth removed last Friday.  He handled it like a trooper.  He came out of the anesthesia very quickly and was alert enough to want to go swimming that afternoon.  He took a grand total of 2 pain pills (although a fair amount of ibuprofen!)  Most kids would have milked it for all it was worth, but Joe voluntarily resumed most of his chores the evening of his surgery.

The biggest hardship for him has been the "no crunchy foods" rule.  This kid loves his pretzels and popcorn!

I thought the promise of all the pudding and ice cream he could eat on the first day would be appealing to him, but he sadly informed me that what he really wanted was a hamburger.

Pudding is a huge favorite in our house, though!  Because of poor lactose intolerant Alan, I had to take to storing it in the basement and only bringing up 4 little cups at a time or else he would eat it until he had lower end problems.

Joe was helpful enough to go downstairs and bring up a couple of packages and put them in the pantry.

On Saturday, he went into the pantry to have some and snapped the two attached cups apart and Alan leaped off the couch.  It was obvious he recognized the sound and like any well trained animal he went immediately "on point".

DH said it reminded him of Dug from the movie Up.  "Squirrel!!!"  Yep.

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?!?!?!