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.

TBT - What Might Have Been

Here is my version of Throw Back Thursday -- blog style!  (Or TBT-BS as I like to call it!)

This post originally appeared January 8, 2013 and it is still true today.

What Might Have Been

Most of the time I do not have an inferiority complex about staying home.  I have a college degree and I always thought I would go back to work in my chosen field after Alan was in school.  That said, both DH and I really wanted one of us to stay home when the boys were young.  As I had worked fewer years than DH and made less money there was never any debate about which of us would stay home.  I have never felt that DH looks down on me for staying home.  On the contrary, he has always been very supportive and occasionally jealous.  Sometimes I get jealous that he "gets" to go to work because the boys can stress me out but other days, I realize I am lucky because I get to work on my hobbies or go out to lunch with friends or whatever.  So overall we have a good balance, I think.

Then something happens ... in this case my Dad invited me to join LinkedIn.  This is a professional network and as I am not working in a profession I resisted for a long time. Then a fellow hobbyist invited me to join her professional network and I accepted.  So naturally I was curious as to what had happened to my fellow classmates.  OK, now I have a bit of an inferiority complex.  Actually it is less that than the jealousy of how my life might have been.  If I hadn't had two special needs kids would I now be manager of this or senior director of that?  Maybe.  But I might also be divorced as the boys' problems have definitely brought DH and I much closer.  We really have to pull together at times in order to survive.

I read this blog recently (Autism Strains Yet Strengthens a Marriage) and totally understood it.  Yet while reading all the comments below the article I was appalled.  People actually made comments that hinted that these people were living in Hollywood.  They never said their marriage was perfect and nor would I say that about mine.  But the title alone says a lot.  Raising special needs children is a strain but if you work together it can also strengthen a marriage.  But (and this is huge) it takes two people who are committed to making it work.  It can be hard work but with a sense of humor and a heck of a lot of stubbornness, it can happen. 

Sometimes DH and I like to joke that we could never get divorced because we would spend way too much money in a custody battle -- only in our case we would be fighting to give custody to the other person!  A lot of marriages do end in divorce especially when there are special needs kids involved.  Sometimes one parent or the other cannot deal with the special needs and that is really unfortunate.  In general I think parenting is easier when you can tag team and that is even more critical when the children are high maintenance.  

So today while I might wonder what it would be like to be a big shot in the working world, I am also thankful that I don't have to be out there trying to do it all alone.

Good parenting does not always equal good children

I was doing some blog surfing today and came across Mommifried: 5 Things We Wish Our Kids Didn't Do and for the most part, I thought it was a cute blog post.  I don't really agree with the dressing themselves part but then again, I never had knock down drag out battles with the boyz.  Joe pretty much picks out his clothes (within limits) and Alan wears whatever I put on the bathroom sink that morning.  I would definitely have a harder time with girls who wanted to dress like little tramps.

But the picture/cartoon that accompanied the blog post just stuck in my craw.  The quote is "A good child does not make you a 'lucky' parent.  There's no such thing.  It's called good parenting.  That is a hard concept to grasp in today's society."

So does that mean a misbehaving child is also the parent's fault?

As the mom of two special needs kiddos, I resent that.  My kids can rarely be described as "good" and yet I think I'm a good parent.  I also know little gems that have grown up in abusive or neglectful environments.  So does that mean that they had good parenting?

I do understand the point I think she was trying to make.  Most of the time when a child is behaving properly and appears to be happy, good parenting was involved.  But there is a certain aspect of nature that cannot be denied.

Thoughts?

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.

Close enough to walk

Where do I start?  It has been forever since I've blogged. 

Mainly I have spent the last month babysitting contractors working in our kitchen.  No, I don't have to sit there and watch them, but being on site helps prevent all sorts of problems and hiccups.  That said, today is supposed to be our final inspection and then the great kitchen project should be complete.  As soon as it gets painted, I plan to devote an entire blog post to the kitchen, but right now it is only functional, not pretty -- and I want pretty pictures. 

I am also having a bit of a "creativity crisis".  I haven't worked on my minis in ages, I haven't done any scrapbooking, I sure haven't done any cooking and I obviously haven't done much in the way of blogging.  I've been reading and playing computer games.  Ugh.

Weekend before last Joe and I went to DC.  Again, I feel like I should do an entire post just to highlight our trip.  It was a lot of fun, and I want to do it justice.  But that isn't what is on my mind this morning either.

Today, I am stressing over people that don't get it.

DH and I were talking this morning about an unexpected offer to watch Alan.  I won't shame this person by identification, but I think it is safe to say that the qualifications are not there.

While it is true that we don't have frequent meltdowns, we do make a lot of daily accommodations -- many unconsciously.  When we were forced to write out specific directions recently for a babysitter, it was amazing the number of things we did differently from each other and yet consistently the same.  Those routines are incredibly important to Alan.  Yes, they have to change sometimes, but we just do it.  So many things that we've learned over the years we do without agonizing over it. 

When someone thinks that we've got it under control or they could do what we do without much training, it is sort of insulting.  Many days feel like we are engaged in guerrilla warfare.  I am emotionally exhausted most nights.

I just wish people would cut me some slack when I don't do what everyone else does.  It isn't just a matter of finding a babysitter -- it is a matter of finding a reliable, adaptable, comfortable, trustworthy, flexible person who has some autism training. 

They sure aren't around every corner!

Supposed to be a happy occasion ....

Any fan of Monty Python will undoubtedly get the reference in the title, but for those of you who don't find bizarre British humor funny, here is the clip ...

This past weekend was my brother-in-law's stepson's wedding.  For all intents and purposes, I consider him my nephew that I only met 6 years ago, and I dearly love his new wife.  I have been looking forward to the wedding for some time now.  

For a little background, let me say that Joe went to his uncle's second marriage 6 years ago and had a fantastic time.  He danced up a storm and charmed the whole room.

This most recent wedding was slightly less successful.  Now I won't be telling you "who killed who" (after all, everyone did survive the event!) but it just wasn't as smooth. 

This was a camp weekend and we sent Alan so we wouldn't have to worry about a babysitter, but Joe elected not to work and to attend the wedding instead.  Hindsight being what it is, DH and I should have "encouraged" Joe to work.

The actual wedding was relatively short and the minister did a fabulous job.  Afterwards we went and hung out at my in-laws' house and that was also painless.  So what was the problem, you might ask?

The reception.

We are walking in and I said, "I'd really like to get a picture of the three of us."  (After all, how often does Joe wear a suit?!?!)  Joe's response?  "Don't you have enough pictures of me at home?"  Okay.  He was obviously in "a mood".  He finally agreed to take ONE picture.  Unfortunately, I put my arm around him.  I was told in no uncertain terms to NOT do that.

Sigh.

Then there was the food.  Joe is nowhere close to Alan when it comes to being a picky eater, but there are certain things he will not touch and one of them is cheese (unless it is Parmesan cheese or on a pizza).  Even though he loves potatoes (and has even been known to eat potatoes with some cheese hidden in their depths once or twice) he overheard my nieces discussing how there was cheese in the potatoes.  It wasn't happening.  Then there was the pasta.  The kid LOVES pasta and it was just Pasta Alfredo with broccoli.  He always eats "pasta with white sauce" at home and he likes broccoli (it is one of the few veggies that he usually likes) but oh, no, not combined.  Even when I ended up giving him my leftover roll at the end, he wiped the little dab of Alfredo sauce on his napkin before eating it.  Sigh.

At this point I left our table to go talk with some of DH's cousins.  DH did point out that maybe I was being difficult too.  Probably.  I have often said that the reason Joe and I spark so much is that we are so similar in personality but so different in tastes.

DH did ask Joe the next day why he even wanted to go when he seemed so determined to not have a good time.  Joe's response?  "Well it had been a while since I went to a wedding." 

And it will probably be a VERY long time before he goes to another one!!!!

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!!!!

When "failing" is good

Joe had his first "real" job interview yesterday and he didn't get the job, but we've changed directions and everyone is happy about that.

Last spring, we had talked to the lead counselor at the special needs camp that he and Alan attend in the hopes of finding a way for Joe to attend camp without wasting a counselor on him.  (DH and I did not want to give up our "kid free" weekends!!)  The counselor knows Joe and when we talked to him he suggested the possibility that they could in essence create a position for him.  The camp folks really came through and late this summer, they hired him as the Assistant Arts & Crafts counselor!  Best of all it is a paying job.  Joe was very excited when he got his first paycheck!!

All decked out and ready to go to "work"

In addition to that, Joe is volunteering one day a week (for 3 hours) at a local hospital.  He also starts today volunteering two days a week (again for 3 hours) at a nursing home and he had been volunteering at a thrift store as well (which does not need him for the rest of September since they are doing an inventory) but he should be able to return there in October.

Any of the three volunteer positions could potentially lead to paid employment and frankly, that is the sort of job where Joe will shine.  He already had a very favorable review at the hospital where he has only been for two months.  I am sure the nursing home and thrift store will quickly realize how helpful and smart Joe is without him having to worry about first impressions. 

Sounds win-win to me!

But back to the failed interview, he had applied for several "bus boy" positions and this interview was with one of the restaurants.  When they called to ask him to come in to interview, the manager told me they were primarily interested in weekends.  I told them about the camp, but according to the manager "we could work around that".

Of course his definition of "working around that" was to have Joe quit his camp job (which he likes a lot) for a job he might not like.  Um, no.  Not going to happen.

So yesterday afternoon his job search woman, Joe and I had a long talk and decided to temporarily abandon his job search. 

This morning Joe came downstairs and informed me that since this was going to be the way of things for awhile he was going to start setting his alarm so that he could be sure to get up on time for his "jobs" (he had been relying on me to wake him up on time). 

I couldn't be happier that he didn't get the "real" job yesterday.

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.

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!

The second born

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

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

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

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

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

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

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

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

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

Next up:

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





 

Little Joe

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

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

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

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

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

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

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

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

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

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

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

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

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

Clutching foam letters & numbers at Discovery Zone.

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

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

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

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

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

Driving Julie Crazy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.