My boyz are growing up (and up and up and ....)

Both my boyz are going to be tall.  That has never really been in doubt.  With hubby just under 6'1" and myself at 5'8" and both of the boyz over 9 lbs at birth, we just knew they were going to be big. 

Now Joe has hopefully stopped growing at 6'3" (but maybe not since he went through his growth spurt late) and when I took Alan to the doctor earlier this week he is 5'7".  So within the next year I will be the shortest one in the family.  (I have been the lightest weight for over a year, but that is another story!)

And while their physical growth has been fascinating for mom to watch, it is their emotional maturity that is the subject of today's blog post.

The boyz have both AMAZED me just this past week.

First off, there's Joe.  I took him to the psychiatrist yesterday and he told the doctor that although he frequently had trouble understanding what people meant when they said or did certain things, most of the time I could explain their motivations to him.  Now maybe that doesn't sound like much to the outsider, but that is huge around here. 

Joe is one stubborn kid.  He is always convinced he is right even when you clearly prove him wrong.  As the parent from whom he inherited most of his stubbornness, I can vouch for this!  We usually butt heads on almost every topic under the sun.  DH is forever telling me to "stop arguing with him!"  Most of the time the truth is subjective so neither of us is necessarily right or wrong but when the truth is pretty obvious, I admit to digging in my heals.  I am usually better at interpreting behavior from body language or circumstances than Joe but to have him acknowledge that fact unprompted was hugely gratifying.  I think most of us have a hard time expressing when we are wrong or deficient in some way, but it does help us grow.

He also continues to do well in his job and likes it!!  He also started work again at the weekend camp and was remarkably dedicated about getting all his paperwork submitted for re-employment.  Proud momma moment here!  He is trying to save money to buy one of our cars so he has stopped going out to lunch every day he can.  This is also rather mature of him.  I'm thinking we can release guardianship for him very soon which makes me incredibly happy.

And then there is Alan.

"Wow" doesn't begin to cover it.  He has been back in school almost three weeks and he hasn't had one "bad" day at school.  There have been "incidents" that they've reported (he didn't want to participate in PE but eventually complied, he couldn't get a soda when out in the community and was very disappointed but dealt with it, I forgot to pack a snack one day and the only things they had available didn't appeal to him, etc.) but nothing major.  They have even told me repeatedly that he is a "role model" for other students.  DH read the note that came home yesterday and said, "Does he have an identical twin around here that you've been hiding from me?"

And at home, he has been good too.

He doesn't have many chores around the house mainly because it is too hard to teach them to him.  But we've been trying to come up with more.  We have been having him take the kitchen trash out to the garbage after we tie up the bag but we always had to tell him to do this.  Then last week I left a bag out (both boyz were in different areas of the house) and Alan came into the kitchen first and took the bag out to the garbage without being asked.  The other thing we have been having him do is sweep the floor after he is done eating -- especially when he has popcorn and leaves little bits all over the floor -- but it has always been a struggle with lots of vocalizations on his part.  This morning he finished breakfast and went out to get the broom without being asked. 

Who is this kid?  Did I have twins and not realize it?

While this is a lot more of a bragging post than I typically write, I did want to let other parents know that it DOES get better.  Joe grew up a lot during high school but he continues to grow now as a young adult.  Alan is just starting to go through the high school maturity and it gives me so much hope.  I still know that he will never be able to live independently and that saddens me.  But when you spend so much of your life in fear of what will happen when your autistic, minimally verbal, occasionally violent child is bigger and stronger than you, it is very nice to know that he might not have to go into an institution but can at least stay here with us.

My little boyz are growing up.  What will I write about now?  I guess my minis ...

Writer's block

I have a really bad case of creativity block.

Some of this is certainly the fact that summer is here.  I have never been a big fan of warm weather.  Alan is home more and DH is currently on a business trip.  Sigh.

I haven't done much recently with my minis.

I've hardly even cooked much in my new kitchen.

I haven't written anything recently on this blog of which I am particularly happy.  Father's Day is coming up and I haven't even written a good tribute to DH.

So, since today is Thursday, I will take advantage of TBT and re-run my tribute from last year which is probably one of my all time favorite posts anyway.  So Happy Father's Day, DH!

Happy Father's Day, DH!

As regular readers know, I do not refer to my hubby by name, merely as DH.  Lest anyone be confused that does stand for Dear Husband NOT D*%# Husband.

The young and the clueless

DH and I met some 25 years ago and it wasn't exactly love at first sight.  We both thought the other had some goofy traits -- I was concerned about silly things like whether or not his clothes matched (they didn't) and he thought I needed to grow up (I did).  Obviously we did eventually reconcile these little problems.

So fast forward some seven years to Joe's birth.  I know that DH and I were terrified.  I would be hard pressed to say who was more so.  We were both the youngest in our family and although we both had nieces, we really had very limited experience with kids in general and babies in particular.  

We both have a vivid memory of leaving the hospital, getting out to the car with Joe and wondering how the heck did we get the car seat in the car?!?!?!   I am positive that he was not properly restrained for that first short drive.  Then there were diapers.  I think I had changed a grand total of two diapers before Joe was born and I'm pretty sure DH hadn't even changed that many.

I'm sure anyone who has ever cared for a newborn remembers that dreaded "transition" diaper.  That's the one with the consistency, color and smell of rancid tar.  We got Joe's at about 3 in the morning on his first night home.  While trying to clean it up (which took two of us) we were both christened along with the wall and floor of Joe's room -- ah, the special joys of little boys.  I was in so much pain from trying to breastfeed and a difficult birth that all I wanted to do was cry but DH just laughed which made me laugh and like so many things that would come later, he helped me get through.

Joe wasn't always an easy baby.  He would make himself go rigid and thrash like there was no tomorrow, but like many with autism he was the world's cutest toddler.  However, he only had about 10 words until he was almost 3 when we started our own version of ABA so he was definitely a challenge!

DH was always fantastic about coming with me to doctor after doctor and school meeting after school meeting.  I remember when we had home ABA with Joe and DH would make it to most of the team meetings.  Our ABA coordinator told us she didn't even know what most of the dads looked like and here was DH sitting in and contributing in most of the meetings. 

He would take Joe to the pool, the playground and even built a swing-set for him.  (And 14 years later, that swing-set is still in use by the younger child.)  But Dad and Joe are still pals and play tennis, chess and go for bike rides.

But I think what I like best about DH as a father is that he was never upset about the fact that Joe didn't play conventional sports.  We tried both t-ball and soccer when he was younger and they were complete disasters.  But it was never an issue.  I know so many guys that want to live vicariously through their male off-spring and DH was never that way.  He happily took Joe to gymnastics and later piano and bowling.  He taught him how to play tennis and we both taught him to ride a bike (with DH doing more of the running than yours truly!)

He also liked just relaxing and being silly with Joe.

Although he had a little denial before Joe was diagnosed he probably had less than me with Alan.  I was just convinced that lightning did NOT strike twice.  Alan was such a different baby than Joe -- cuddly, amazing eye contact, lots more babbling -- that I did not think he could possibly have autism. 

But once again, with DH's fantastic sense of humor and help, we got through all the sleepless nights, the poop smearing, the B-12 shots in Alan's butt while he slept, the bizarre climbing, the endless "Alan-proofing" of the basement, etc.  

The poor guy even has allergies but when Joe wanted a cat, DH said sure. 

And DH still has some of the ickier jobs with the boys.  He usually ends up taking Alan to the sedation dentist because it takes two males (DH and the doc) along with three nurses to hold him down and give him the initial shot.

And through all this, he remains my best friend and the person most likely to make me laugh.  Overall I couldn't ask for a better husband or Dad to my boyz!  

Love you, babe!

List of thanksgiving

I am thankful this month, I just decided not to bore my Facebook friends by posting things daily.  Not that I'm bored reading the thankfulness posts that my friends write -- I actually enjoy them.  Who knows why I do what I do, but that is the way of the world.  So in no particular order, here are 25 things I for which I am thankful ...

#3 My miniature Thanksgiving meal

1.  My husband.  OK, I lied about no particular order.  This is always number 1 for me.

2.  The boyz.  They are quirky, weird, stubborn, funny and sweet.  Although I wish they did not have autism, I still am glad I have them.  They have improved me as a person.

#2 My crazy kids

3.  My minis.  Having a hobby really makes life more beautiful.

4.  My kitty.  Diesel frequently makes me laugh and loves to be petted.  He isn't into being held, but that is OK.  He still makes me feel loved.

#6 Me with my sisters

5.  My nieces.  I have four smart, beautiful and just plain nice nieces.  Although I am still glad I had boyz, I do love watching these four grow into wonderful young ladies.

6.  My sisters.  I have two fantastic sisters.  The one in town frequently watches the boyz and the one out of town lends an amazing amount of moral support.

7.  My in-laws.  I have the best in-laws in the world.  Although they do not always agree with our choices, they respect them and again provide an amazing amount of moral support.

My inlaws

8.  My parents.  I do love them even when they drive me crazy.  They have given me a wonderful blueprint for marriage and faith.

9.  My faith.  Although I sometimes question what God has given me, I do know he is there to help.

My parents

10.  Friends.  I have some fantastic girlfriends (and guy friends) from all aspects of my life and they mean more to me than they will ever know.


11.  Our country.  I live in a wonderful country.  Although I hate "politics" I respect and appreciate the military and our freedom.

12.  Did I mention my husband?

13.  Doctors and modern medicine.  Although the cause of autism has not been pinpointed (personally I believe there are multiple causes), I cannot imagine my life without the boys' medications and their doctors. 

14.  Air conditioning.  Even though I am not using it at the moment, I would not survive a summer without air conditioning!

15.  Books.  There is nothing better than escaping into a good book.

16.  Movies.  Except possibly watching a good movie.

17.  My neighbors.  After the hateful letter that grandmother in Canada received, I am once again thankful that no one has ever done anything remotely that mean to me.

18.  My health.  I hear so many people that have physical aches and pains.  While my feet might not be pain free yet, they are on the way and my "problem" could be fixed.

19.  Chocolate.  'Nuff said.

20.  Food.  Maybe this is silly, but I am thankful that food is so plentiful that I have a weight problem.  I much prefer this to the alternative.  I still don't think I can be thankful for exercise but maybe someday ...

21.  I am very thankful my left foot healed a lot faster than my right foot!

22.  Schools.  The boyz have been in every style school imaginable (except homeschool) and without fail we have had some amazing teachers.  Many I am still thrilled to call my friends.

23.  Respite providers.  We try to have at least one date night a month and without some of the amazing ladies I've met, this would not be possible.

24.  Social networks.  I can't believe all the people I have met via Facebook and Google+.  I have also reconnected to a bunch of old friends.  All I have to do is turn on my computer in the morning and I have a bunch of friends to see.

25.  And last but not least, my husband.  He is my best friend and a wonderful dad.

So what are you thankful for this month?

The status quo is nice ...

It's easy to see how the cast has gotten dirty!

Things have been quiet around the Sparks household lately but you won't hear much complaining either!

Unfortunately Alan still has his cast mostly on (I had to cut off the part that covered his palm as it was broken and snagging on things) but we opted to not take it off at the 4-5 week point.  We all knew (including the doctor) that a splint would not stay on.  Now the cast is scheduled to come off at just over 8 weeks from when it went on.  The cast itself is beyond disgusting.  The teenage boy who hasn't had a real bath in over 6 weeks is pretty gross too.  The walls have scratches everywhere from the cast.  I really had not planned on repainting the whole house in spring, but it is looking like there will either be massive touch-ups or new colors in our future.

We do now have good communication with Alan's aide.  Our biggest concern when we started at his new school seemed to be the lack of communication (something at which his teacher of the last two years excelled!!!) but we now have a communication notebook that goes back and forth.  It seems a bit archaic after the e-mails of the last few years, but it is consistent and informative and that is all that is required.

The branches of a Bradford pear are so soft he can rip them off!

Joe is still volunteering at two different places but one of his days at the nursing home was cut.  This is probably because his job coach is having his own hours cut by the government shutdown.  But as DH's job is not in danger from the shutdown, it is hard to complain that Joe's volunteer hours are being cut.

A miniature chandelier I made this month

DH and I have been keeping busy by working out and trying to eat healthier.  We both know we are larger than we are supposed to be and periodically one or the other of us tries to be good but we both know that we have the best results when we are in sync with each other.  We've been using www.myfitnesspal.com and it has actually been sort of fun.  However, I will not be writing about workouts or diets other than in passing because I usually find those rather boring to read.  Of course there are always exceptions but if I am not interested in reading about it, I'm not going to write about it!

I've been reading more (although nothing intellectual -- I read to escape my life!) and trying to snag a little time to work on my minis.  I haven't even been reading all the blogs I used to read although I'm trying to make time for favorites.

DH and I also got to have a movie date night this past weekend and saw Lee Child's The Butler.  I highly recommend it for everyone.  It is truly a powerful story while still being humorous and (it seemed) historically accurate.  Of course halfway through the first scene with Ronald Reagan (played by Alan Rickman) DH leans over and says "It's hard to see Snape as president" and I had to work pretty hard to not giggle through the rest of his scenes.

Alan has conquered a few new trees with his cast, but otherwise it is just the status quo around here ... and that is nice!

I never wanted autism

I never wanted autism. 

There I've said it. 

Now I've probably pissed off any adult autistics that actually read my blog and possibly some of the parents.

Still it is true.  When I was pregnant I didn't think "I hope my older son has a hard time making friends.  I really hope my younger son still talks in single words at 15 years old.  I want a family that can't go over to the grandparents' houses because the younger one cannot follow simple rules.  I want to spend every family gathering taking turns with DH sitting outside and watching the younger son climb trees.  I want to still be explaining basic idioms to my 18 year old.  I want to stop taking family vacations when Alan starts having meltdowns on the beach.  I want to stop certain fun family traditions because my 14 year old won't go out in the dark." 

Does anyone think these things?

But as soon as I say "I hate autism" people jump all over me. 

I really find it hard to believe that anyone wants this life.  Don't get me wrong -- if they ever would find a cure, I would not force ANYONE to take it.  I would discuss the options with Joe at length.  I think he would chose to take it, but if he said "no" that would be that.  Of course so much would depend on side effects that even discussing the possibility is sort of foolish.

But I get so frustrated by the "neuro-diversity" crowd that thinks we do not need a cure.  Maybe they don't.  But I do.  I want to unlock the mystery inside of Alan's brain.  He is so cuddly and affectionate and has such an infectious giggle but he also has a blood curdling shriek that I don't understand.  I try.  I come up with all sorts of interpretations, but I just do not know what he wants some days.

Trust me, I get that life isn't fair.  DH and I regularly joke about that.  Most of the time, I laugh about our life.  After all, it is inherently funny to watch some of Alan's climbing activities.  But when he is wrecking our house and trying to climb on the electrical fixtures and the heater because we aren't letting him outside to climb, it is a little less funny.  When he was going through his "poop smearing" phase and we were cleaning his room at least every 24 hours, that was definitely less funny.

I am terrified quite regularly when I think of the future.  I have a child that will need life long care.  What happens when I am not around to provide it?  My older son cannot care for my younger one.  Both DH and I are the youngest in our respective families.  That means all aunts and uncles are older than us.  What happens when Alan is a 30 year old adult and everyone around him is 60+?  He can already overpower me and he is still (marginally) smaller than me.

When I said that Kelli Stapleton did the wrong thing but I wanted to understand it, I was criticized.  Someone said that anyone that thought like that didn't want an autistic child.  That in fact, they wanted a neuro-typical kid.  Um, yes.  Actually I do want a neuro-typical child.  Two of them would be nice.  I love my boys with all my heart and soul, but I don't want them to have all the struggles they do.  If some people believe this makes me a bad parent, then so be it.

I've never claimed to be perfect.  Far from it, as a matter of fact!  The popular expression is "love the sinner, hate the sin."  Well, I love my autistic kids but I hate their autism.  That is just the way it is.

Not even a small pebble ...

They say people in glass houses shouldn't throw stones, but right now so many of them are still chucking boulders around it isn't funny.

Just a few short days ago, a fellow Autism parent snapped.  Was it right?  Hell no.  Could it happen again?  Most likely.  To me?  God, I hope not.  To someone else I know?  Maybe.

There are so many questions and so many possibilities to our lives and those of our children and yet so many people (especially special needs parents) are still so trapped.  When Alex's mother stabbed him repeatedly earlier this year, so many people were so quick to condemn her.  How can any mother kill her child?  Others tried to be understanding.  She was just dealing with so much.  In turn, these people were vilified by the autism community.  There is no excuse for killing your child. 

No excuse perhaps, but sometimes people snap.

The statement has been made over and over again, "God never gives you more than you can handle."  I happen to disagree with this immensely.  Mental illness throws everything out the window.

If a typical teenaged star athlete commits suicide, does everyone instantly label the parent as bad?  Maybe.  But most likely there was some mental illness that caused the child to lose hope and lose the will to live.  If a mother (or father) of a typical child kills him/her there is instant horror and outrage.  How could he/she be so selfish?  But when a parent arranges a murder-suicide the first assumption is usually (I would hope) "what brought them to this point?"  After all when you try to take your own life as well it isn't so much selfishness as despair.

So many people have never dealt with the intense violence that was a part of Kelli and Issy's life.  Many have never dealt with the crushing choices facing them.  How about living 2.5 hours away from your home and the rest of your family in order to have your child go to the best school?  I am willing to bet not many people could take that one on the chin and keep going as though nothing happened.


Autistic people will say that if you try to justify a crime like this you diminish an adult autistic's life.  I think it is safe to say that Issy's life (and Alex's) were already diminished.  Does that make it right?  Hell no.  Does that make it sad?  Immeasurably.

So before all the haters out there jump on me for excusing or justifying this crime, let me be clear.  I AM NOT!  I am trying to understand.  I just want to keep this from ever happening again.  I wish I had answers.

Maybe this hit me especially hard because both these children were 14 and my Alan just turned 15. 

All I know is I'm not throwing any stones at Kelli ... not even a small pebble.

Halfway there

It was two weeks ago today that Alan broke his arm.  Two weeks now that we've been giving him sponge baths (ooooo, is that a treat!)  Two weeks now that we've been dealing with scrapes to our walls and cars.  Two weeks now that we've been trying to limit his climbing.

Surprisingly, it has not been that hard.

Happily perched on his favorite branch!

Okay, it hasn't been a picnic by any stretch of the imagination, but if you had told me three weeks ago that I would NOT be counting the days until the cast comes off, I would have said you were having a drug flashback or something.

Alan has been a trooper.  The first day he kept telling us "clean up" and "take off" and "help" and holding out his arm.  But then he sort of resigned himself to the thing.  We actually have not heard any requests for the cast to come off in at least a week -- which is pretty amazing really.

Climbing with the cast

We kept him inside for 11 days with constant pestering for "outside" and "climb tree".  Finally on Friday we relented and let him climb but told him that he had to climb down instead of jumping.

This worked for about an hour before he decided to go for it and get that sensory feedback that he craves from jumping. 

School tells us pretty much the same thing.  He has been an amazingly good sport about the whole process.

But today I get to call and schedule the removal of that darn thing!  And then I will probably start counting the days ... 

Happy Monday.

"I'm Sorry"

I have heard so many times from special needs parents how much they despise the words "I'm sorry" when it comes to their children.  Well, I'm sorry, but I don't get that one.  What would you rather people say?  "Congratulations!"???

There isn't a person alive that thinks when they are pregnant "oh I hope I get a special needs child!"  But that doesn't mean we don't love them all the same.  Now there are amazing people out there that choose to adopt special needs children and all I can say is "Wow!  More power to you!"

But when it comes to a child you gave birth to or that you adopted not knowing their issues, I think "I'm sorry" is a fine thing to say.

A person that says "I'm sorry" isn't saying "I'm sorry that your child was born."  They are merely saying "I'm sorry you have these difficulties."  Some days, I feel sorry for myself, too!  Other days I am pretty thrilled that I don't have typical kids.

Usually when I hear "I'm sorry" it is because I am trying to get some form of accommodation (like no waiting at the doctor's office) so I just say "thank you" and move on.  Occasionally I hear it when I am catching up with an old friend and I am explaining why my 18 yo high school graduate is not looking at colleges.  Then I usually respond with some snarky comeback like "well at least I don't have the tuition payments you have!"

On the other hand I do get tired of people telling me what therapy to use or how I should parent.  I'm sorry, but live at my house for a week and then make your snarky comment about how unhealthy my child eats.  Do you honestly think I don't know that it is unhealthy?

So for all those parents out there that despise "I'm sorry", I'm sorry, I just don't get it.  There are a lot bigger issues out there.

Baby steps

Yesterday was "doctor day" in the Sparks household!

First morning after breaking his arm.

Between two previously scheduled "well" visits, a follow up on my foot, a follow up on Alan's arm and a nasty outbreak of poison ivy on Joe, I spent a good bit of time yesterday at the doctor.

The good news is that everyone is on the mend.  Joe got some steroids for his poison ivy, Alan's arm will not have to be reset and I am healing nicely with nice mobility in my toes.  Yay!

At the doctor's office yesterday.

Alan has been surprisingly accepting of the cast.  The first morning he backflipped out of bed and slid down the stairs (cast first), but has been more sedate of late - although he was climbing in the basement stairwell yesterday!  He also decided to do some weird balancing at the doctor's office.

His constant pestering to "go outside" and "climb tree" (two things he had never in the past requested with his talker but had requested relentlessly via talker on his first few days of being housebound) has abated.  He still asks a few times a day and tries the back door for good measure, but we haven't had a single meltdown over his house arrest.  Yay!!

The walking wounded

He also seems to like his new school.  He even asked for me to pack his lunch on Saturday (his way of asking if it is a school day) several times which I took as a promising sign.

He also cooperated with getting x-rays and having the pediatrician listen to his heart (although the ears were NOT happening this year!)

So ... baby steps ...

Back to school ... Alan style!

Like so many things he does, Alan did his first day of high school in his own signature style. He started the day by coming down the stairs in his usual fashion and getting on the bus like any other kid. He apparently had a fairly good day at his new school other than not liking that lunch was later than usual.

Later that evening, he was climbing (as usual) in his favorite cherry tree and he jumped out (as usual) and apparently landed bad (most unusual). He started screaming and crying and came inside. We checked him out and DH noticed that his wrists felt different. On his right wrist we could easily feel both bones but on the left, we could only feel one.  He was also allowing us (even encouraging us) to put pressure on his left wrist.

So about 7:40 last night we packed up and headed to the local ER. Once again, this hospital was pretty fantastic with only a few mishaps. They got us out of the waiting room in record time and into the pediatric wing.  They brought in a cool sensory light machine that actually distracted him for a little while.  They went and found trains when we said he liked them.  They even got me some pillows so I could elevate my foot.

Although Alan was NOT happy about being there but we did get him X-rayed after a little struggle and the ER doc said he had a 30 degree angled break in the main bone of the arm. We needed to sedate him to set the bone and first we tried the liquid sedative that he took for his MRI, but we could not convince him to drink it this time.  He fell asleep on his own about 9:45 and the nurses came in to give him his sedative shot about 10:15 but he freaked out and we had a huge wrestling match and the sedative didn't take.

Of course, as DH pointed out, he had learned not to fall asleep at the hospital so he was fighting it pretty hard.  They came up with a second medication (at this point there are so many meds in his system they had to be super careful about drug interactions) and were planning to come in with another one.  We weren't sure how late we were going to be there at this point so I called my sister to come get me (I can't drive because of my foot) and I left a little before midnight.

They came in to give him the second sedative and this seemed to work.  Then they took another X-ray because one of the nurses apparently heard a "grind and pop" during the wrestling match and they were worried we had done more damage. Turns out we set the bone perfectly.  (What is that saying about God protecting fools and small children?)

The orthopedist opted to do an above the elbow cast because otherwise we figured he would pull off a wrist only cast like an uncomfortable sleeve.  Before the orthopedist came in, the nurses told us that it would probably be a splint and he'd get his cast in a couple of days after the swelling went down.  Luckily there was no major swelling and he came home with a plaster cast.  He can't get it wet.  DH could have opted for a fiberglass cast because those can get wet but they can also be picked apart according to the doctor which would be bad with Alan's OCD (the consummate picker!) so he opted for the plaster.

Alan goes back on Monday for another X-ray but right now the plan is to have the cast stay on 4 weeks.  Of course, he is supposed to go to the sedation dentist in 5.5 weeks so that might be taken into consideration.

DH and Alan finally got home about 1:30 am and we all crashed as best we could.  Alan does not like the cast and pulling at the soft edges a lot at first. Of course this will leave the rough plaster exposed so we are trying to stop him. He doesn't like the sling although that would probably take some of the weight off his arm.  He is getting much better although he did fall off his chair in the kitchen when he reached down to pick up a dropped item and the weight of the cast upset his balance.

And that was how we spent the first day of high school ... Alan style!

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!

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?!?!?!