Awareness, Acceptance, Accommodations and ....

Autism Awareness ... Acceptance ... Accommodations ... and

I was recently reading a great blog post by Meriah Nichols called Coming to Terms with Disability in my Life and it got me thinking about all the buzz in the autism community about whether we should be trying for "Autism Awareness" or "Autism Acceptance".  Personally I have always said "both" but after reading this blog post, I got to thinking that we need to add at least another one -- "Autism Accommodations".

First off, we DO need to be aware that autism is out there.  Despite all the fanfare and promotions that Autism Speaks provides (personally I have some issues with them, but still think that they have done some good) there are still a LOT of people out there that are not aware what autism looks like or how different all those folks are from each other.

For this reason, I do not think promoting Autism Awareness is wrong.  I think it is still necessary.

And yet, so many higher functioning folks out there just need to be accepted as they are.  They have learned to cope with their brain wiring.  Temple Grandin has said that she would not get rid of her autism if she could.  I don't blame her.  She has come a long way and accomplished so much with her gifts.  For her, autism has been a gift.  Albeit she had some serious difficulties to overcome, but she did overcome them.  Why should she change?  She should be accepted as she is.

For this reason, I applaud the Autism Acceptance folks. 

I still think a lot of the neuro-diversity (ND) movement is inherently wrong.  I don't think that just having autism insures that you are "gifted".  For every Temple out there, there is at least one Joe (who struggles to find a minimum wage job with a coach just so he can have a modicum of independence) and probably one Alan (someone who will never be able to live independently and will need round the clock care from someone or most likely several someones).

For this reason, I think we need to add Autism Accommodation into the mix.

Joe needs accommodations.  For him, this will most likely mean a coach to help him get the hang of a menial job.  But once he gets the hang of this job, he will probably do it happily and without assistance for years to come.  We need menial labor.  Like it or not, a society that is composed entirely of college graduates unwilling to do menial labor will not survive. 

Even if ever single one of those college students works as a dishwasher/busboy/waiter/clerk/bagger during school, there will not be enough.  And there will always be those that financially do not need to do the work or are unwilling or unable to work in those type of jobs while in school.

But what about the Alans out there?  What about those kiddos that cannot hope to live independently?  Can we hope for more than accommodation for them?  Is it so selfish on my part that I still want a "cure" for Alan. 

• Note that I use the term "cure" in quotes.  I do not believe he is diseased, but I do firmly believe that there is some fundamental bad wiring in his brain.  I use the term "cure" because it is easier than typing out "correcting whatever is wrong with Alan's brain through whatever medical or therapeutic or pharmacological means become available in his lifetime" every time I want to express this feeling!!

What can we use for a buzzword for the Alans out there?  We need something for them too.  They are the ones that suffer the most with autism.  But because they can't get online and blog about how they feel when they can't express themselves, adult autistics assume the Alans of the world feel as they felt growing up.  How can they be sure?  I am pretty sure Joe doesn't think about his autism the same way Alan thinks about his.  I can't be positive of course, but considering that I think about my childhood differently than my siblings and we were all "neuro-typical", I think it is safe to say that two boyz with similar but not identical diagnoses will think about things differently. 

So why are folks in the ND movement convinced that they know what my child is thinking better than I do?  I am the first to admit, I have no clue what Alan is thinking most of the time.  I know that he is thinking.  I know he is processing his environment and trying to adapt it to accommodate his wants and needs. 

There is so much that needs to be changed to accommodate him that I can't help but think it would be easier to change him.  Not to mention, even if we could change every aspect of his environment to accommodate him, it still wouldn't be enough.  He cannot live alone and I can't help but think that is a very lonely way to grow up.  If that means that ND folks think I am trying to change the essence of him, then so be it.  I don't completely understand why the ND folks are so convinced that because I want to "cure" him, it means I don't love him.

TBT - Do ya feel lucky?

Welcome to Julie's Boyz' version of Throw Back Thursday -- Blog Style (TBT-BS: got to love that acronym!)  I am taking Thursdays to rerun some of my older blog posts.  This one originally ran on March 27, 2013.

An assortment of "free time" pics for Alan's iPad from March 2013

Do ya feel lucky?

When I was younger, my mom used to always call me her "good luck charm".  I did seem to win an inordinate amount of random drawings.

On our honeymoon, DH and I went to Bahamas which is a big gambling place.  We both came very quickly to the twin conclusions that we were not particularly lucky and we really hated losing our hard earned money in a game of chance.

When our first baby was born, people were still throwing around numbers like 1 in 10,000 for autism so our knowledge of autism was next to nil.  Of course to add insult to injury, Rain Man had only come out a few years earlier so what knowledge we had was skewed as well.

Of course by the time Joe was diagnosed they were using numbers like 1 in 5000 but still I had several people assure me that it didn't run in families.  If I knew then what I know now, I would probably have stopped there and I also think I would have been a better mother.

I was reading Stuart Duncan yesterday and while I normally love his blog, yesterday's post just grated on me.  In Don't fear autism and certainly do not fear your own child he says basically that parents are not having children because they fear autism.  He says we should instead reassure prospective parents.

Reassure them that they most babies are born healthy?  I think they know this.  I think if anyone is not having a child because they are afraid their child would have autism, they are simply not the gambling type.

In the case of subsequent children once one is diagnosed, personally I think this a good thing.  When you are at a high risk for something you should be allowed to consider whether that risk is personally worth it.

When this generation of autistic children reaches adulthood, they will put a hell of an additional strain on the economy since most of them will not be functioning members of society.  If the 1 in 50 number is truly accurate, then at least 1 child in 50 will also need to have a career that focuses on the care of autistic adults.  That just boggles the mind.

Yes it is very possible (98% possible) that you will have a neurotypical child.  But a 2% risk to forever alter your life requires very careful consideration.

Could you be a good parent to a special needs child? 

Maybe these prospective parents know they are too selfish to give up their whole lifestyle forever if their child is severe.  Maybe mom and dad are both very into their careers and know that they could not make all the meetings that would be required.  Maybe they are struggling financially and have heard how costly it is to have a child with special needs.  Maybe their marriage is already rocky and the idea of raising a special needs child single-handed is daunting.

That is a choice.  Maybe they are just not gamblers.

Here are two faces ...

If you've met one person with autism, you've met ONE person with autism.

They are all so wonderfully different.  Many issues we had with Joe, were non-existent with Alan.  Then of course, Alan has vexed us in ways that were never a problem with Joe.  It is impossible to tell by looking at someone whether or not they have autism.  Here are two faces of autism ...

But there are so many more!

Today is Autism Awareness Day and for many the entire month of April is a time of reminder.  A reminder that many of these kiddos wander, many are non verbal, many have special skills and many don't.  Most have more "issues" than their neurotypical counterparts, but they aren't necessarily bothered by them.  Many of them are very happy, cheerful people to be around.  Some aren't.  There are very few "Rainman" autistics out there. 

The adults are as different as the kids.  There are those that just want to be accepted how they are and those that still wouldn't mind a cure.  There are those that get offended if you call them a "person with autism" and those that don't.

Likewise there are many parents out there and we are as different as the children we are raising.

There are the parents who embrace the autism and the ones that fight it.  There are the parents who push their children and the ones who coax.  There are those that never stop trying alternatives and those that just plug along.  There are those of us that blog about our adventures and many that are fighting silently, daily in the trenches.  There are some who are still in denial and some who shout it from the rooftops.  And unfortunately, there are those that aren't strong enough to do it anymore.

From Carly to Temple to Einstein -- autism is a spectrum.  While I personally would like a little more balance in my rainbows than I see in my daily life, that doesn't stop me from enjoying the little victories and the funny stories.

Be aware of autism in those around you.  Be accepting and accommodating of those on the spectrum and their caregivers. 

In short, "Be excellent to each other!" (and party on, dudes!)

Our college option

I found out about a new option for Joe for college this week.  Up until now, I had pretty much written off college.  I had hoped to maybe get him to take some basic classes at a community college, but full-time, dorm life college I had figured was never going to happen. 

Then this week I found out about a local college that has a program for 18-25 year olds with intellectual or developmental disabilities.  It is a two year program with internships, peer mentors, etc. for 20 students where the kids live on campus in a supervised dorm.  Several of the kids from his past activities are also applying.  Reading over the requirements, I was over the moon -- he met all of the criteria easily.  This was THE program I wanted for Joe and it was in town. 

It is expensive, but we had put aside money in a 529 account and that can only be used for post secondary education.  Except ... that neither of our children were likely to ever go to college.  So now we had this money that was going to be penalized heavily if we were to ever access it again.

Overall this seemed like a match made in heaven.

Until I brought it up to Joe.

The very first words out of his mouth were "I don't want to live in a dorm."

Crap.

Finally after talking to him at length, I figured out the reason was that he was worried there would be fire drills in college.  Nope, no fire drills.  A secondary (but more minor) concern was uniforms.  Nope, no uniforms. 

So now he is excited.  Now we just have to see if he can get in.

Say some prayers, peeps!

Separating Autism from Autistics

Many people believe that you cannot separate autism from autistic people.  They say it no different than gender or race.  Last time I checked, it was still possible to get a sex change operation and Michael Jackson sure tried to change his race.

To me autism and autistic people are very different things.  To me autism is no different than any other neurological disorder.  In many ways, I think autism is a lot like bipolar.  There are some real perks to bipolar for some.  A lot can be accomplished in a manic episode.  But there are some serious minuses as well.  People with bipolar are at a greater risk of suicide.

So I decided to go to the autism expert in my house and I had the following conversation with Joe last week.

Mom: "So, Joe, if someone would come up to you and say 'I really hate autism.' would you think this meant they hated you or some of the things that autism makes you do?"

Joe (AKA Mr. Literal):  "If they said they hated autism, I would think they didn't like some of the things about autism.  Like my friend, Harris -- sometimes he can really annoy me but I still like being friends with him.  And Alan is OK as a brother but it sure would be nice if he could talk like me."

That made a lot of sense to me.

I read a blog awhile back where the mother said that her child was autism and autism was her child.  All I could think was how sad and limiting that is. 

I think my boyz are so much more than their autism.  While some of their personality traits have probably developed in response to having grown up with autism, some are just there.  Alan can't begin to tell a joke, but he has the funniest sense of humor.  Joe genuinely wants to be helpful.  Alan cleans up all the time and has since he was a toddler.  Joe is wise beyond his years but so unbelievably naive.  They are some weird little conundrums!!

When someone says you cannot separate autism from autistics, I want to say that is like saying you cannot separate red from the rainbow.  You can.  Maybe it makes the rainbow less pretty, but then again, if you have too much red it can overwhelm the other colors and make them much harder to see. 

I just want a little better balance in my rainbows.

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.

"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.

Another one bites the dust ...

Alan is so hard on his clothes.  We just bought him all those cute shirts a couple of weeks ago and two of them are already ripped ... and I'm not talking a tiny hole!

Today (before he ripped it) he was wearing the t-shirt that says "Yes, I'm autistic and a blessing to those that get to know me."  We were out shopping and one of our stops was at the supermarket.  We also get our prescriptions filled there and I was making my monthly pick up plus a few extras since I am having foot surgery on Wednesday.  Alan was pushing the cart and just kept pushing it past the pharmacy to the checkout lanes.  I could hear him jabbering and cooing but I couldn't see him.

When I finished at the pharmacy, I walked as fast as is socially acceptable to get over to the checkout lanes.  I was very curious what he would do.  Turns out he got in line but didn't go so far as to take the items out of the cart although he was up to the cashier.  The young man running the checkout lane smiled at me and said, "I really like his shirt.  I'm on the spectrum too.  I have Aspergers."

As Joe would say, the good news is that the shirt was seen and appreciated before it was torn.  Hmm, I wonder how I will patch this?

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!

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?!?!?!

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 not sure DH had 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 immensely.

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.  But 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!

Why I think it is okay to hate autism ...

If you just read that title and are all set to argue, you might be autistic, but please hear me out. 

Most people who say they hate autism (and yes, I am sometimes one of them) don't see autism as synonymous with autistics any more than depression is synonymous with the depressed.  I have depression and I HATE it. I have two children with autism and sometimes I hate autism.  I do not and could never hate them.

Most autistics say that it is okay to hate the "co-morbids" (the nasty little disorders that frequently co-exist with autism) but not the autism itself.  OK, let's take a closer look at that.  In our family, my older son, Joe, is fairly high functioning, verbal, usually helpful and yet has been known to have meltdowns that can peel paint.  My younger son, Alan, is frequently violent, OCD and mostly non-verbal.  Both have depression on occasion.  OCD, violence, and depression are all considered co-morbids.  And according to autistics, it is okay to hate all of those things. 

So, why is it okay to hate the co-morbids but not the core?  While Alan's core disorder is autism, Alan IS NOT autism!!!!  He is so much more.  He is giggles and cuddles and adorable blue eyes.  He is incredibly flexible and could probably be a gymnast if he didn't have autism and could follow directions.

The autistic point of view (I believe) is that since it is an operating system they are synonymous.  The person cannot be separated from the disorder.  I suppose they are saying it is like race.  How can you separate the race from the person?  You can't.  So while it might be okay to say "I hate being black, white, Asian or Latino." it IS NEVER okay to say "I hate blacks, whites, Asians or Latinos." 

And yet, I think that telling people not to hate autism can be very alienating to families who are struggling just to get through the day living with autism.  Cleaning up poop and vomit, meltdowns, anxiety attacks, social ridicule, sensory induced pain -- these are all things that are intrinsically difficult.  I can't imaging anyone cleaning up vomit or watching their child get called names for being different having a lovely warm fuzzy feeling about autism.  Some families are in the trenches with these things and they can't see beyond their current, overwhelming, sometimes painful circumstances.  These are some of the families who probably say they hate autism. 

If an autistic were to tell me that he hated neurotypicality, I would not take that to mean that they hated me.  I would take that to mean that I confused them and/or they didn't understand me.  Is he a better person if he spells out that important difference?  Perhaps.  But in any case rather than being a huge fight between autism parents and autistics, the whole conflict should probably be put down to a difference in communication.

Truthfully, I think most people who say they hate autism are really saying it confuses, scares or overwhelms them.  They are using what I would call a neurotypical shorthand.  If autism is an operating system, I would have to say it is an Apple.  I am a PC/Android person through and through.  Anyone who knows me well has heard me complain of Apple products.  As an operating system, it confuses me.  So yes, I have said I hate Apple on occasion!  That said, I love both of Alan's iPads for very different reasons.  His school issued one is turning out to be a fantastic communication tool and the one we purchased is a favorite source of entertainment.  So I may hate Apples, but I don't hate Alan's iPads.

I have heard more than a few people say that they hate their hair (usually when it is curly).  I really think what they are saying is that it doesn't do what it is "supposed" to do (hmm, that also sounds a bit like our kids).  So if it is okay to hate part of you and wish it could change, why is autism different?

If my older son were to tell me that he hated his little brother, I would jump all over that.  If he were to tell me that he hated Alan's autism, I would completely understand that he meant that Alan's autism frustrated, scared, overwhelmed and/or annoyed him.  Alan's autism affects everything about our family -- our ability to go out to dinner, over to Grandma and Grandpa's house, vacations and even the grocery store -- and so we all are inconvenienced by autism and I do think it is okay if Joe would hate Alan's autism but not hate Alan. In our house autism is an inanimate object not a person. 

He doesn't ever say it, but sometimes I think Joe hates his own autism. He hates that it is hard for him to make and keep friends because he perseverates on bizarre topics. He hates that he does things so much differently than his peers.  That said, the kid has incredible self esteem!  So I do not believe that hating (or being inconvenienced or annoyed) by his autism or by his brother's is damaging to his self esteem in the least.

We live in a world where we fiercely defend freedom in so many realms.  It does seem a little bit unusual to me that we are also quick to condemn people who don't feel the same way we do about autism.  Am I a better person if I love autism than if I am overwhelmed and confused by it?   Regardless of how you feel about autism, all people deserve respect.  Perhaps instead of getting angry at, or feeling sorry for, people who hate autism we should attempt to understand why they feel that way.  These families don't need condemnation. They need support and understanding. 

In many ways it is like telling a drowning person not to hate the water.  In their overwhelmed state, that kind of choice is not really possible for them.  But, lift that person out of the water and into a boat and then they can see how beautiful the water is.  They can see it in a different light than they did before and may realize that there is a beauty and majestic uniqueness about their particular lake or ocean.

We aren't going to get very far spreading the message of autism acceptance if we judge those who don't agree with our viewpoints.  Instead, if we work to understand and support others, we may find that we don't have so many differences after all.

To Blog or Not to Blog ... that IS the question!

I am a classic youngest child.  I am a "peacekeeper".  By this I mean that while I have opinions on lots of subjects, I don't really feel the need to have everyone agree with me.  Many people who are very close to me think they know how I feel about certain topics and some of them are dead wrong.  If someone is on a political or religious rant I tend to either tune them out or try to see their point of view.  If their opinion is different from mine, I usually do not express mine at the time.  It is just my peacekeeper personality.

I started this blog late last year as a spot to vent about the boys.  I love my boys like crazy but they also irritate me at times -- what kid doesn't?  They are also a continual source of laughter and that was my initial goal -- to entertain the masses with their antics and if I found some other moms or dads with younger kids, maybe I could offer them some help, advice or experience.  I never wanted to deal with controversial topics.

I guess I should have considered my audience.

I read a lot of other special needs "mom" blogs and love them.  Even those that have very different parenting styles from my own still have a great love for their children and a funny point of view that I enjoy.  Sometimes I look at these blogs and think "thank

goodness Alan isn't still finger-painting in his poop" or "thank goodness I like the kids' schools and their teachers seem on the same page as we are" or even "thank goodness for DH, because he is a huge help!" and it helps keep me thankful for my lot in life.

On the other hand if I only looked at my Facebook feed (which is mostly moms of typical kids that I know from other walks of life) I might be having a daily pity party because everyone I know seems to have high school seniors and all I am hearing about are college plans and majors and I'm just hoping that Joe can get a job.

So I try to do a balance. I read about the struggles of other moms of special needs kids and compare my life to theirs and I'm in the middle of the pack.  Some have more "issues" and some have less but at least I don't feel like a freak.  Then I check my real life friends and can be genuinely happy for them.

But writing the blog is a different story.  I have recently wondered if I want to bother with the actual writing because people can be so mean.  For some reason people feel like it is fine to tell you anything they want (including how wrong you are) on your own blog.  A blog is by definition personal, so why do people have to be so hateful?

A mere two weeks ago before her life imploded, Kate from Chasing Rainbows wrote about the same thing.  I hope and pray that no one said anything horrible to her during her recent tragedy but I haven't had the time to go through all the multitude of comments to see.  I have seen an incredible amount of support and that has been very uplifting to me personally.

But during this same time frame I watched a much bigger blog (Single Guy Laughing) go though something similar.  To me, Dan is one of those guys with an interesting enough life (it isn't an endless downer, but it isn't all rainbows and unicorns either) and a fabulous talent for telling it like it is.  But wow, people just feel inclined to say ANYTHING to him just because he is a blogger.

After reading these two very different people have the exact same thing happen to them I got to wondering why I am "putting myself out there" as Kate said.  I am not making money on my blog.  It was supposed to be therapeutic.  So can't the same thing be accomplished by just reading other blogs and maybe commenting on their Facebook pages?  Is it therapeutic to be told you are wrong?

Then I considered my audience.  I was thinking that it would be mostly parents reading, but autistics do a fair amount of reading and writing of blogs as well.  Let's be honest, how flexible is the average autistic person?  Yeah.  I am pretty sure I have never won an argument with Joe in 18 years.

Unfortunately many of the more vociferous autistic bloggers do not like or agree with many autism parents.  Whether it is awareness vs. acceptance, Autism Speaks, a puzzle piece for the symbol of autism (really, is this worth debating?), the need to use "trigger" words, calling someone an "autistic" instead of a "person with autism" and whether or not it is OK to "hate" the disorder there are just a few too many divisions between autistic adults and autism parents for this peacekeeper.

I had pretty much talked myself into letting the blog die and then I got 3 new followers.  Huh.  To blog or not???