Why the cure analogies are invalid

Most of the time, when someone expresses a desire for a "cure" to the autism community, one of the neuro-diversity (ND) folks says, "If you want to cure your child with autism, you are no better than the religious extremist parents who try to pray away their child's homosexuality."  I have a few problems with this.

First off, a homosexual can have a rewarding and fulfilling life whether or not they are "cured".  Let's not get into salvation here, folks, I am talking about their life here on earth.  They can hold down the job of their choice, live independently, and do almost anything they wish -- except get married in some states, but that seems to be changing as well. 

Many autistics (especially those that are leaders in the ND movement like Ari, JER, Temple, etc.) also live fulfilling lives.  Wonderful.  Do I think they should be forced to take a "cure"?  Hell, no.

But what about the autistics on the other end of the spectrum?  What about the non-verbal folks or the ones with debilitating co-morbids?  Can they live rewarding and fulfilling lives?  Many of those folks will need long term care and cannot ever hope to live independently.  Is this a full life?  Not so much.

Secondly, the religious extremist is in conflict with the homosexual child.  One wants the condition while the other does not.  In the case of my older, verbal son, we are both opposed to the autism.  He has told me repeatedly that he wishes he didn't have autism.  So we are NOT in conflict.  While I have no idea what the younger son would say about this (as he is non-verbal) he is the one that will have the most limitations on his life. 

So if I do not consider a cure, aren't I dooming him to an institution some time in the future? 

Isn't that almost child abuse?  It certainly seems neglectful to not even consider the possibility of a cure.

The other analogy that is usually thrown out is that it is like you are saying you want a totally different child -- a non-autistic one.

OK, I get this one, but it isn't accurate.  If a parent were to say "I would do anything to get rid of my son/daughter's autism" then I would be right there with the ND folks to condemn them.

But I have NEVER said that I would do "anything" to cure my child(ren).  I refuse to put either of them through anything that I feel would harm him.  If a cure is never found, I will continue to raise and love these two quirky young men I have been given.  Their autism is only one aspect of their personality.

Would they have the same personality without their autism?  I actually think they would.  It has been formed.  But I do want to know what my 16 year old is thinking when he giggles for no apparent reason.  Do I care if he toe walks or flaps or makes eye contact or whatever?  Not so much.  But I would like someone to find a cure for the unnecessary violence and communication problems.  In my opinion those are not co-morbids they are the autism.

So yes, I am still hoping for a cure.

TBT - Driving Julie Crazy

Happy Throwback Thursday - Blog Style!  Since I am once more in the middle of driving Alan to camp every day, it seemed appropriate to re-run this post from last year.  Although I no longer have a "new" car, everything else is still appropriate!

Driving Julie Crazy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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 monsoon

Everyone has heard the expression "It never rains, but it pours."  Last week, we had a figurative monsoon.

Monday (St. Patrick's Day) was the day we started ripping out our kitchen.  Yay!  We've been looking forward to this for months -- or in my case, years!

So the weekend before was supposed to be a double camp weekend for the boyz.  This was going to be perfect.  We could move the kitchen table, etc. into the dining room and buy some last minute kitchen things we've been wanting to shop for together (new chairs, dishes, faucet, etc.) while we had the house to ourselves.  We were also going to go over to my parents for a belated birthday celebration (remember it snowed then) as well as St. Pat's dinner.  My mom loves to host things and it just doesn't work at her house with Alan so this was going to be a wonderful relaxing, ADULT weekend.

Friday afternoon

Friday morning Alan gets up to go to school and five minutes before the bus is scheduled to come has explosive diarrhea.  Now with Alan, this could mean he is sick or it could mean he got too much dairy in the previous few days (he's lactose intolerant).  I kept him home to be safe and he seemed a little sluggish at first but by early afternoon he was back to his typical self.  I told myself we had just finished off some Cookies & Cream Pop-tarts and went ahead and packed for camp.

When I dropped him off, I told his buddy what had happened (I don't believe in trying to sneak something like that by them).  I knew that Alan technically should not be at camp (it had been less than 24 hours since he had diarrhea) but he didn't SEEM sick.  In fact, he heard me say "camp" earlier in the day and repeated it several times which is usually a positive thing.  He doesn't say "yes", he just repeats the words if that is what he wants.

DH and I grabbed a late dinner Friday night and watched a movie.  I talked to the nurse at camp Saturday morning (about something different) and she said Alan was doing fine -- eating breakfast, etc.  It seemed like the crisis had been averted.  We ran errands, had some beer to celebrate St. Pat's and went over to my parents' house.  About a half hour after we got there, I got a call from the director of camp to say that Alan was just lying around and he hadn't eaten any lunch or dinner.  Great.

So we went to pick him up early.  He still didn't seem "sick", but he wasn't exactly "right" either.  Shortly after we got home, I got sick.  I didn't have any of the really nasty stuff, I was just weak, shaky and NOT hungry (all I ate all day Sunday was a granola bar).  Then Sunday night on the way home from camp, Joe puked all over his car while driving.  My sainted hubby cleaned that up while Joe and I slept.  Luckily by then Alan seemed back to normal.

Monday morning I struggled to vertical long enough to let the contractor in and drive Alan to day camp (it was his spring break but I had signed him up for a day camp knowing this was close to kitchen time) and then came home and slept some more. 

By Monday afternoon I felt better.  When I picked Alan up, one of the staff stopped me to tell me about the college option for Joe.  We got the paperwork on Tuesday, had the tour on Wednesday, filled out the paperwork on Thursday and submitted it on Friday.

Joe was FANTASTIC about filling out most of the paperwork himself.

Meanwhile, the kitchen went from this ...

to this ...

to this ...

I'm exhausted just writing all this, so hopefully you have a sense of our monsoon from last week.  At least this week is calling for calmer weather ... and the installation of new cabinets!

I don't feel inspirational

Today is my birthday (Happy Birthday, Me!) and as I read through all the birthday wishes on my Facebook timeline, I got to wondering if any of these people really understand me.

Several people made some reference to how I "inspire" them.  Seriously?  I feel like such a complete and utter failure as a parent.  Some days (like today) I feel like the worst parent ever.

Today is yet another snow day for Alan.  Other parents (although fewer with each subsequent snow fall) post about how they "get" a day off with their children but all I do is think about how having the boyz home will "ruin" my birthday.

DH texted me this morning about 10:30 and asked me if I was hiding from Alan.  Yep, pretty much!  Alan ALWAYS goes to lunch at 11 when he is home.  Note:  I said "goes" to lunch.  We cannot stay home unless we want a meltdown.  This kid has fast food at least two days a week (and usually more).  I'm a failure as a nutritionist.

We make a stop on the way home to get a few things.  Alan asks for a soda at Target and I ask Joe to go get it.  He tells Alan to "Wait here" even though Alan likes to come with his big brother.  Alan yells his battle cry and Joe gets frustrated.  I'm a failure as a referee.

We get home and Alan wants to go play in the snow.  I distract him with a video because I am sick to death of sitting outside while he sleds.  I'm a failure as a companion.

Alan wants to snuggle with me in bed.  I read and he watches his iPad.  OK, maybe not the best mother/son bonding time, but we both like it.  I guess I'm not the worst parent ever, but I still don't think I'm inspirational.

Then my sister sent me a birthday card that said "Birthdays are about celebrating life, love and longevity ... so the more you have, the happier you are!"  I think that might be the point of today.  Maybe I should just let my friends think I'm a better person/parent than I think I am.  After all, only you know your worst flaws, right?

Out of the mouths of babes ...

Most parents of autistic kids have a story to tell about how their child(ren) have said a swear word or two or ten -- sometimes daily.  I have been incredibly lucky about that because neither of my boyz have ever done that.

Joe goes out of his way to NOT say words that he thinks are bad or inappropriate.  I have him read to me daily (and have for years) and for a while whenever the word "God" would appear (not as a noun) he would change it to "gosh" and he would change "damn" to "darn" and he would do it without pausing or stumbling so for the longest time I didn't think any of the books he had chosen had any cuss words.  This worked fine in most stories but then he was reading the Percy Jackson series and the kids are at Hoover Dam and they start talking about the "dam snack bar" and how they want a "dam burrito" and he figured out that it was only funny if he actually said the word dam/damn.

For a 19 year old, he is so surprisingly innocent about some things.  When he was reading and came across the word "bitch" he would say it without pausing because to him that was a female dog and nothing else.  I remember having to teach him what it meant when someone flipped you off.  So he is certainly not going to let loose with the F-bomb in the middle of a store.  Thank you, Lord!

With Alan, he probably would use curse words if he heard them.  He parrots the most surprising things.  But even before we knew about their diagnoses, DH and I have worked very hard to not say curse words in front of the boyz.  Since DH works in an industrial environment, his "work language" is very different from his home language.  And while I might have cussed way more than was appropriate in college, I don't really use that kind of language anymore so the boyz just don't hear a lot of curse words.

I remember a co-worker of mine that had a baby about the same time as I had Joe.  We got together once when the boys were about 2 and he was (very proudly) telling a story about how his toddler had said "F&%$" after slamming his finger in the toy box.  He proceeded to tell me that his wife "who was a linguistics expert" thought this was great because he was using the word appropriately.  I'm sorry, but I don't think it is EVER appropriate for a toddler to say that word -- even if he HAD just slammed his finger in the toy box.

But back to Alan.  He is considered mostly non-verbal but always gabbles up a blue streak.  When he is eating, when he is climbing, even when he is watching videos and certainly when he is in the bathtub there is a steady stream of sound coming out of his mouth.  Most of it is just vocalizations or stims, but every once in a while a word or two is clear.

When he was a toddler he started saying the word "tugboat" in what was very clearly an "I'm angry" occasion and we joked that we would start swearing tug-BOAT (because the emphasis was always on the second syllable) whenever we were angry.  At his one school he had different "names" he would call each of his teachers when he was upset.  One was usually the tugboat, one got "I'm mad at you" which sounded a lot more like "you a Jew" and the other one got a stream of syllables that sounded just like "you high, you high, you a ho" which provided a lot of fodder for teasing among the gals (who luckily were all very understanding folks!!)

Then came "tattoo".  I have never figured out what it was supposed to be, but all of a sudden he started saying the word tattoo.  The teachers (and when it happened a second time recently, the bus drivers) asked me if someone if the family got a tattoo.  Um, no, I have no idea what he is saying or why.

So last night after bath, the dreaded f-bomb seemed to come out of his mouth in the midst of the gibberish.  All I could think was please don't let this be like "tattoo" or "tugboat" which we heard often and clearly.  Not only do I not want to explain where it came from to all the relatives and strangers that he will probably offend, but it will most likely send Joe into cardiac arrest.

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?

My escape has escaped

I've never been into reality TV, non-fiction books or documentaries.  I always joke that I have enough reality in my life and my reading or movie watching is for "escape".  When someone suggests a true book about autism for me to read, I cringe.  I don't want to spend my precious "fun" time reading about that which I am already living.

I've been a stay at home mom for almost 19 years. I've worked part time here and there and volunteered a lot when the kids were younger but for the most part, I have been unemployed since Joe was born.

I always thought I would go back to work as soon as our youngest was in school full time, but when Alan had been kicked out of Sunday School, gymnastics and Kindermusik by the time he was 6 I just stayed home.

For the most part, I haven't regretted it and neither has DH. We often joke that he is in charge of the income and I am in charge of the outgo and they are both equally important. As long as I keep our spending in line, we are able to put aside a little something and still have me stay home.

The last few years I have even had the time, interest and resources to get back into miniatures which has been a blissful escape for me. When I am having a tough day, I put Alan on the bus and head down to the basement to play with my minis. When the afternoon or evening is tough, I know I can escape as soon as both boyz are out of the house the next day. I work on them rarely on weekends -- mainly because I prefer to spend my evenings and weekends with DH which is its own escape.

But ever since Joe graduated in May, I am having to relearn how to be a SAHM.  For the last 12 years both the boyz have been in school almost full time.  This has given me more than enough time to keep the house marginally clean, run errands, work out, read, have an occasional lunch with a friend, do my Facebook and blogging and most important -- work on my minis.

Starting this summer I began to bring projects upstairs and work on them at the kitchen table while keeping an eye on Alan in the yard.  This has helped some, but some of my projects (despite being "miniature") are not very portable.  In addition, all my supplies are in the workroom in the basement.

Joe decided a few months ago that he was going to get back into working on models.  (I almost said "modeling" and I had this sudden flash of Mr. Camera Shy hamming it up for a photographer!) We've been happy that he was doing something other than watching movies.  Because really, how many times can you watch the entire Harry Potter movie series in chronological order?

He has finished two cars and while they aren't what anyone with a distinguishing eye would say are well done, they are helping him follow written directions, improve his hand to eye skills and work on project completion  -- which are all important things.

So what is the downside?  This has put Joe in close proximity to me for large chunks of my day that used to be my escape.  Now add to that my foot surgeries and you have a Mom that really wants to see her 19 yo gainfully employed!!

Calgon take me away ... oh never mind, I can't get my foot wet yet ...

Thank goodness for boyz ... except today!

I love my boyz beyond belief -- their autism, not so much -- but just the fact that they are male is awesome!  Most days.

 Most people have an idea before they have children of what boyz or girls are "like" and I am no exception.  I clearly remembering wanting no more than one boy.  I had one brother growing up and several of my cousins and friends had similar family arrangements and they worked pretty smoothly, I thought.

I knew I did not want multiple boyz.  My husband only has a brother and my brother-in-law has two brothers and no sisters and a family we were close to growing up had three boyz and one girl and the stories and memories terrified me.

DH loves to tell the story of his brother giving pointers to the neighborhood boy on the best way to beat up DH.  Then there are the stories of the summer that DH finally caught up in size to his older brother.  World War III is usually used as the analogy and all I can think of is my poor, sainted mother-in-law -- but that is another whole blog post!  I remember going over to the house with the three boyz while I was growing up and it totally morphed my brother.  He was sweet and funny most of the time but we'd go over to their house and he would get into fart contests with the other boyz and all that gross "boy" stuff.  No way.  I had decided that was NOT for me.

But when we started thinking about a family, all I could think about was having a boy.  I had four nieces and no nephews and my brother had died shortly before my wedding and all I could think about was a baby boy.  I wanted a boy!  Everyone always says "you will love the baby no matter what the gender" but I knew I really wanted that boy.  Boyz (plural) still scared me and if I knew my second child was going to be a boy, I probably would have preferred that my first be a girl, but since nothing in life is certain, I just wanted that boy.

Lo and behold, Joe was born and there was much rejoicing.  Both sets of grandparents and mom and dad were all thrilled.

Joe was absolutely the most beautiful baby EVER (and I had numerous strangers come up to me in public to reinforce that belief) but he wasn't always the easiest baby.  It took me a long time to decide to have a second baby.  DH wanted them closer together, but I was thinking 10 years apart was about right!  The thought of two boyz no longer scared me.  I just wanted a "typical" child.  Ha!  Does karma have a heck of a sense of humor, or what?!?!?   At least Alan was a much easier baby!!

So back to why I am thankful for two boyz ...

1.  Boyz are tough.  I have a dear friend that has a daughter Joe's age.  They both got their braces at similar times.  Sweet girl would be in the nurse's office several times a week for Tylenol.  Joe never asked for pain killers.  In two and half years.  Tough kid.  Alan cut his head open and I found out when I found the bloody washcloth he used to try to clean himself up.  Even tougher kid.  Thank goodness for boyz.

2.  Boyz consider shopping to be a chore which is also how I look at it.  I never have to take them shopping to cheer them up!  Thank goodness for boyz.

3.  Boyz' toys are much better than those specifically "for girls".  I hate the color pink and find changing a Barbie's clothes or matching her accessories to be boring.  But building a railroad track?  That is fun!!  Thank goodness for boyz.

4.  Boyz' books are better.  I'd much rather read Percy Jackson or even How to Train your Dragon than The Twilight books any day!!  Thank goodness for boyz.

5.  Boyz are usually lower upkeep.  They will never want their hair highlighted, a pedicure or the latest handbag.  A suit for prom is a lot easier than finding the "right" dress -- although it might cost as much.  In general their clothes cover more surface area, too!!  Car insurance is more for boyz, but a wedding is a lot more.  Thank goodness for boyz.

6.  Drama is definitely lower with boyz.

In case you missed all the clues, I'll spell it out.  I am not a "girlie" girl.  Despite my obsession with miniatures, I don't care for most things "feminine".  I am an engineer by degree.  I love jeans and t-shirts and my boyz.  So why is today different?

Today is the day I cleaned the bathrooms.  Let's face it -- boyz miss.  A lot.  An awful lot.  Yuck.

Miss me?

Miss me?? 

Alan -- oh so ready for the cast to be off!!

I have been blissfully absent from blogging for most of the last month.

Most of you probably haven't noticed.  Many of you probably don't care.  Some of you will probably tell me how much you've missed hearing about my antics with the boyz.  Yes, they've had them.  No, I haven't written about them.

My miniature greenhouse (made from a birdcage) is almost done!

Mainly I've been taking time for me. 

Julie. 

Not "Mom" and certainly not "Mom of special needs kiddos". 

A little roombox called "Tea for Two"

Just Julie.

I've been working out -- most weeks at least 3 days!  Considering I only had my surgery 10 weeks ago and the boot has only been off for about 6 weeks, I think that is pretty awesome.  Some days my foot still hurts.  I can't do more than a lunge or two before I have tears in my eyes.  I can't genuflect in church without hanging on to the end of the pew and looking like a klutzy idiot (oh, wait, I AM a klutz -- but let's not discuss the idiot part!!)

Since I tend to like working out first thing after Alan gets on the bus and that was when I usually blogged as well, that has probably been the single biggest contributing factor to my decreased blogging.

the tea cart

I've even lost 3-5 pounds (depending on the day) which is only a tiny fraction of what I probably need to lose (20) but at least my weight is headed in the right direction for the first time in a long time.

A little Southwestern themed roombox I made

I have also been working on my miniatures a lot and have actually finished two projects in the last two weeks and almost finished with my third.  Considering only about 3 weeks ago I was close to having a panic attack that I had too much started and would never finish anything, that is pretty impressive.

Climbing again ...

Alan also got his cast off last Thursday.  He (and we) were pretty miserable for the 24 hours following the procedure (he had severe nausea from the anesthesia and then didn't sleep much that night) but my happy child is back.  He has even done some tree climbing since the cast came off although I think in some ways he misses having the indestructible protection on his arm.

Fat cat

As for Joe, he is still volunteering three days a week and spouting his little gems. 


Diesel is still fat and happy.

Life at the Sparks house is back to normal -- whatever that is!!!!

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.

"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 ...

Joe-isms

Joe comes out with the funniest observations on life.  Mostly I've just shared them on my Facebook page and with family, but I decided to collect as many as I could remember and put them in a blog.

I was dressed all in purple one day and Joe told me that I "looked like a plum."  Since he likes plums, I think it was a compliment, but it is always fun to try to translate the autistic mind.

He told me earlier this year that he hoped if he had kids that they were more like him and not like Alan because "Alan is just work, work, work, work!"

Joe took one look at this house (across the street from Alan's camp) and said, "That is really unsafe.  Alan could NOT live there."  (In case you can't tell from the picture, there is a second floor door that opens to a porch roof and there are no handrails.)

Once Joe's homeroom teacher had been out sick for several days.  When she saw Joe on her first morning back she said, "I really missed you, Joe!"  His response?  "Well I managed to do just fine without you."  Luckily, she laughed and he amended it, "Well, I mean, it is good to have you back, too."

One night when we had Chinese for dinner and my fortune was something like "Your house will always have peace."  Needless to say, this gave DH and I quite a chuckle.  When we stopped laughing, Joe says, "That will never happen!" in a very matter of fact voice.  Another night there was no fortune in my fortune cookie and Joe decided that meant I was "unfortunate".

A few weeks ago, when I mentioned to Joe that I had a stomachache, he asked me if I thought "I might be getting pregnant."  (At that moment?!?!)

When I had a minor fender bender less than a year after totaling my previous car, Joe wanted to know if the new car survived.  (No query on me, I guess he figured I was walking and talking so I must be fine.)  When I told him that yes the car would be fine, it just needed a little repair, his response was, "Good.  Because I thought you were going through cars awfully fast."

Most parents try to prepare their child for the world.  I think I might have to prepare the world for my child!

An eye on the future

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

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

He is such a little conundrum!!!

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

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

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

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

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

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

Some fantastic blogs

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

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

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

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

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

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

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

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

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!