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

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

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

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

The boyz have both AMAZED me just this past week.

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

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

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

And then there is Alan.

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

And at home, he has been good too.

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

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

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

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

Overthinking

Lately I've been spending way too much time overthinking things.  I worry about what I comment on other people's blogs and I worry about what I write on my own.  I don't like to offend people and it seems like some people are so easily offended.

I thought about putting in my two cents about Robin Williams whose death saddened me greatly.  I thought about writing about Ferguson since I lived in Ferguson the first six years of my life but I find myself annoyed at both ends of that battle as well.  I thought about writing about Alan's first week of school (which was phenomenal, by the way!!) and he didn't even need to go to the ER like the first week of school last year.  But really I have no clue what to say about that other than that my Bug is growing up and as he matures he is getting much more even tempered.

But I haven't written about any of those things because I have been overthinking all of them. 

Then today I took the boyz to a local fast food place for lunch.  DH is away doing his own thing this weekend so it was just the three of us. 

It was a very easy lunch.  Alan was being vocal, but well behaved.  I noticed that the roof was leaking and even though several of the customers were commenting on it to each other, no one had bothered to inform the folks that worked there so I went up to do so.  As I passed one woman's table she smiled at me.  She was about my age and was there by herself.  Most of the other customers were elderly so I took the smile to be "Thanks for telling the employees because none of those old folks were going to bother."  And then I stopped thinking about her. 

About five minutes later she walked up to my table and said, "You seem like a nice family.  Here's a gift card for your next visit."  I thanked her and she walked out.  After a lengthy discussion with Joe about "random acts of kindness" I thought about her some more.

I realize there is an excellent chance that what she was really thinking was "Oh my gosh, here is a woman with a special needs son and I feel sorry for her so I will give her a little gift."  There is also a chance she was just doing a random act of kindness and hadn't noticed Alan -- not likely, but possible.  Most likely she was just trying to figure out a way to encourage me.

I might have to remember to do something similar sometime.

All I know is that I'm not going to overthink this event.  I am just going to enjoy it.

Happy Saturday!

When losing feels like winning

Joe recently learned about betting.  Now he wants to bet us about everything.

"I'll bet you a quarter that our team wins tonight."
"I'll bet you a quarter that Diesel is sleeping on my chair again."

Thank goodness his favorite bet is a quarter!

Last Sunday after we dropped Alan off at camp, he says to me, "I'll bet you a quarter that Alan likes camp."  Oh man, you have no idea how much I wanted to lose this bet!

Drop off was ROUGH!

Dad stayed with Alan and I went to go sign him in and drop off medicines.  The medicine line was ridiculous.  150 special needs folks and only four nurses signing in medicines.  And they had to rewrite every single one.  We got there on the early end of drop off and I stood in line for at least 20 minutes and probably closer to 30.

Meanwhile Alan was crying like his heart was breaking.  He tried to get back in the car and DH locked him out of it.  Then they walked him over to look at the pool and when he expressed an interest in swimming, the counselor took him back to the cabin to put on trunks.  Then DH moves the car and hides.

Poor guy.  Later he told me that he had the harder job (I agree) but that it was just as well we split up like we did because he probably would have snapped and yelled at someone in the medicine line.

When we left Alan was only sniffling and there had been no headbutting or hitting.  His tears are killers though.  He just looks so freaking miserable.

Meanwhile all I can do is wonder what he is thinking.  Does he think we abandoned him?  Does he understand enough to know that we will come back and this isn't forever?

Monday night was so weird.  Joe was working.  DH gets home and says, "What do you want to do?  Go out for dinner?  See a movie?"  Wow.  No sitter required.  We almost had an empty nest.  We could get used to this.  Nope.  We won't.

Several times throughout the week we started and looked around frantically for Alan.  It was definitely weirdly quiet.  For a kid that is essentially non-verbal he is noisy!

It was a productive week.  I got Alan's room painted (I hate painting) and we took Joe out for steaks -- something he loves but of course Captain Picky won't touch.

Alan's one on one counselor was wonderful and communicated well with me -- we exchanged over 100 texts over the course of five days!  She even got him to shower (something we've been wanting for forever) and we were able to carry it over for the last two nights.  He still doesn't like them, but we are at least hopeful!

By Thursday, I was missing my Bug something fierce, though.

It turns out a good time was had by all.

After we got home last night, Joe comes in to see me.  "So did he have a good time at camp?"

Yes, he did and I was so happy to lose this bet that I paid him double!

What have I done?

Alan is going away to camp next week.  It will be for FIVE days.  I am having a minor panic attack about it.  The only time Alan has been away without family overnight was one camp weekend.  Every other time, at least Joe was with him.

What have I done?

He can't tell me if he's miserable.  He can't tell me if they mistreat him.  He can't tell me if he's having the time of his life and wants to go every week next summer.  He can't tell me anything about it.  Oh and he's three hours away from home -- his weekend camp is 30 minutes away.

What have I done?

I know the camp has a good reputation.  Lots of kids go each week (about 150) and they've been in operation for years.  He will get to be outside and probably climb trees to his heart's content.  But what if they won't let him climb trees?  How will he communicate his problems?  Heck, half the time I have no clue why he's upset.  How the heck is a stranger going to figure out the problem?

Well, he's gone to assorted schools since he was 3.  I was never there.  He did just fine.  Most of the dedicated professionals who have worked with him have been fantastic.  They aren't in this field for the money.  They are in it for the kiddos.  Of course the bad apples get all the press so that is what has me stressed.

In reality he will probably have a blast.

I am looking forward to painting his room (it has been probably 8 years since I painted it!) and maybe just having a little "me" time.

Joe is counting the days until little brother leaves.

DH will take a a day or two of vacation and we have some fun evenings planned.

We are all looking forward to five straight nights of sleeping through the night!

What have I done?

I've arranged for a week away for all of us.  As Thomas the Tank Engine says, "Sometimes a change is as good as a rest." 

Here's to a week of change!

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.

The next step

Joe graduated from high school over a year ago.  I never thought it would be this hard to get him a job!  Although I know he interviews poorly (when asked if he would like doing something he usually answers truthfully "well I guess it would be okay if you paid me enough") he is a hard worker and really wants to be useful.

So after our college option disappeared for this fall, my interest in getting him busier peaked.  We reapplied to Vocational Rehab (which we had abandoned last fall because of a personality conflict with his employment specialist) and while we were waiting for the speedy government, his job coach at the coffee shop (Kim) heard about a local hospital who wanted to hire special needs folks.  He had an interview last week with a few folks from the hospital and several people from Kim's company.  He reluctantly let us dress him up in a suit.

Turns out he was the star of the interviews.  One other boy dressed up but Kim said it looked like his polo had been over with her truck and one girl had "hygiene issues".  Well that is one way to get Joe to stand out in a favorable way! He has his second interview with the hospital tomorrow.

Practicing dish washing ("Mom, not THAT kind of dish washing!")

Then yesterday Kim told me about a dishwasher position at a local restaurant.  This morning Joe told me that this week was very stressful and he was looking forward to no more interviews for awhile!

But he did go over to the restaurant with Kim today.  Although this isn't even Kim's job, she is trying so hard to get Joe a real job and I am truly touched.  Joe came home positively bubbly (for him) and told me that the restaurant wanted to hire him.  "And they even are going to pay me!"

He is still going to the hospital interview tomorrow but he told me he was pretty sure he wanted the dishwasher job.  Of course, I am torn.  Part of me says "go for the hospital" there is more long term benefits to working there.  The other part of me says "go for the restaurant" and work there until next fall and then reapply to college.  The hospital would probably pay more but it is also a 25 minute drive from home on a busy interstate.  Pros and cons to both.

But whatever route he chooses, my 6' 2" little boy will be working somewhere very soon -- and they are even going to pay him!

Writer's block

I have a really bad case of creativity block.

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

I haven't done much recently with my minis.

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

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

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

Happy Father's Day, DH!

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

The young and the clueless

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

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

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

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

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

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

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

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

He also liked just relaxing and being silly with Joe.

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

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

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

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

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

Love you, babe!

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.

Guerrilla warfare or why I appreciate teachers

As a mom to special needs kiddos, I guarantee you that I appreciate teachers more than your average parent -- even more than a parent who happens to teach.  I love my boyz but some days (especially Sundays), I tend to count the hours until Alan returns to school.  It is just emotionally draining at times.  I am unbelievably cut off from family and friends.

Even though I have teenagers, I can't leave them alone in the house for even the half hour it would take to run to the grocery store.  I have been known to put a video on for Luke and run up to the grocery store to pick up milk or prescriptions and I am wracked with guilt the entire time.  What if he climbs somewhere he is not supposed to climb?  What if he falls and hurts himself?  What if he opens a window and climbs out on the roof?  The first two have happened repeatedly and although the last one hasn't happened (yet) it is certainly within the realm of possibility.

Now that Joe is driving, I can at least send him to the store, but there are certain things he is not capable of doing.  He won't use our medical flexible spending card.  He certainly will not look for the best deal when it comes to picking out soup, crackers, eggs, apples, etc.  He won't buy any sort of produce unless it is something he will eat.  Even though I have tried to show him how to pick out assorted veggies and meats, he is not comfortable buying them.  Luckily I have some pretty fantastic neighbors who have been known to share an egg or an onion occasionally.

As always, DH helps immeasurably.   But one of us always has to be on "Alan duty".  24/7/365  So when DH has to work on the weekends (it happens when you work for a utility!), or wants an afternoon off to work out, play a game with friends or even go see a movie by himself, that means I am on duty.  Don't get me wrong, I do NOT begrudge him that time, just like he does not begrudge me the time I spend on miniatures during the school days.  We both need that time "away".  But for the person responsible for Alan, it is "duty".

In many ways dealing with Alan is like guerrilla warfare.  According to Wikipedia, "Guerrilla warfare is a form of irregular warfare in which a small group of combatants such as armed civilians or irregulars use military tactics including ambushes, sabotage, raids, petty warfare, hit-and-run tactics, and mobility to fight a larger and less-mobile traditional military."

That pretty much sums it up.  Alan ambushes, sabotages, fights petty battles and is infinitely more mobile.  DH and I are still larger (albeit not for much longer), less-mobile and traditional.

Most of our "battles" are small.  But they are frustrating.  Sunday morning Alan was whiny.  I didn't know if the lack of structure was starting to get to him or what.  Finally in desperation I gave him an ibuprofen early in the afternoon.  Guess what?  He calmed down and was a doll the rest of the day.  Poor kid.  Something was hurting on him, but he couldn't tell me what.  All I had to go on was a whiny kid.  Very frustrating!

But all these little things only highlight why I appreciate teachers.  Teaching is truly a vocation.  At the start of summer vacation, I am sitting here appreciating his teachers every moment.

Not my day

Have you ever seen those t-shirts that say "Today is not your day.  Tomorrow is not looking good either."  Yep, that is me.

After having read a bunch of different people's blog posts, I am almost thinking that there is something in the air.  I thought springtime was supposed to make people hopeful.  That has never been the case around here.  There are too many allergies and spring is followed by summer (my least favorite season) so I am generally a bit of grump in the spring, but in the past, it always seemed I was in the minority in that.

Today the biggest source of my angst is Joe.  The poor kid has almost no friends.  He keeps inviting one of his former classmates to go places (dinner, movies, etc.) but as last weekend was prom and she went with someone else, I am pretty sure it is a "friends only" relationship.  I am fine with that.  Except he doesn't really have ANY other friends.  And if she actually has a boyfriend, I suspect their platonic dates will continue to decline.  He has two other kids with whom he occasionally exchanges texts but there is no one else with whom he can "hang".

This is breaking his mom's heart.

He is such a neat kid, but he is so socially backward and I just want him to have some friends.  He never saw the need while he was in high school and now he doesn't have anyone.  I was thinking if he got a regular job and was around the same kids day in and day out that this might change, but alas, the kid does not have a regular job.

He frequently goes out after work (to play miniature golf, to eat lunch, to shop) but it always by himself.  I love this independence, but it would be so much better with friends.

Since we found out for sure that he won't be going to college this fall, this has gotten more urgent for me.  I don't think any of us will be happy to live another year like the last.  He doesn't even do much on the computer -- which I will admit is most of my social interaction these days!

So how can I generate social interactions?

The haircut from h&%$

Last night Alan got his hair cut.  We've been going to the same kid friendly hair salon for more years than I care to remember.  Even though Alan is taller than most of the hair stylists, they just smile and say "come on in!"

The last 3-4 visits have been HELL.  There is really no other word to describe them.  Alan gets in the car willingly enough and even gets out of the car at the hair salon fine.  He goes inside and starts stalling but still nothing major.  He has to use the restroom and agonize over which video to watch (but he always selects Shrek) and then he even sits in the chair and gets the cape on with only a yell or two.  And then all hell breaks loose.

He stands up and sits down so often and so fast that the poor Ali has to cut his hair a swipe at a time.  We've tried holding him in the chair.  We've brought his iPad but he wants nothing to do with it.  Last night I even tried sitting on him and he threw me on the floor (so much for deep pressure).  I've tried bribing him with his favorite Skittles (they were also thrown on the floor) and last night I even brought a copy of his current favorite video (hoping he would pick that instead of Shrek) but no luck.  Sometimes Ali cuts a swipe or two while he is sitting on the floor, but then he stands up.  He moves incredibly fast.  Of course, when he is getting ready for school he moves incredibly slow but that is another story.  He is so strong he was tipping over the chair!  I actually thought the darn things were anchored but apparently not. 

I am guessing it is a sensory thing, but it never used to bother him.  It is only the last few haircuts that have been a problem. Of course as soon as it is finished he's fine.  I'm covered with hair, shaky and exhausted but he just sits on a bench eating his sucker while I pay.  Sigh.

DH suggested that next time we try to cut his hair at home (I already do Joe's and DH's).  Who knows how that will turn out?  Ali actually does a fantastic job.  It is a darn good hair cut -- except for the experience!

The inflamation that won't end ...

I have an eye condition called episcleritis.  My eye sclera gets inflamed and turns various shades of red.  It is not contagious.  I have not scratched it.  But it does hurt.  A lot!

I tend to get these pesky things when I'm under stress.  I got my first one when I was pregnant with Alan.  I have since gotten 3-4 a year on average -- this is a bit of guess, but I don't think I'm exaggerating.  Some go away in a couple of days.  Most hang around for a couple of weeks.  I have one now that has pretty much been here since the start of April.  Ugh.

I'm tired of people in my house.  Although for the most part the workers have all been polite, unobtrusive and good at their respective jobs, the revolving door involved with a major home remodel is stressful.

Then there are the financial implications of the kitchen.  It wasn't cheap.  We both agreed that we were going to do it "right" because we didn't want to be redoing this in 10 years, but it was expensive.  Certainly more than I initially thought it would be.

Then I got a letter today telling me that Joe didn't make it into the college program.  Truthfully this probably stresses DH and I way more than Joe.  We want more for him than working a couple of weekends a month and volunteering three mornings a week.

Both boyz are having medication issues.  Joe is experiencing severe anxiety about weird things.  A med change should help with that.  Alan's OCD is flaring again.  We are going to the doctor later this week.  Hopefully he can work a few of his usual medication miracles.

Then there are some family issues which I don't want to go into on the blog.  Some are health related.  Others are conflicts.  Each issue is another straw upon this proverbial camel.

But on the bright side, I think I like the new kitchen color!  It's a cheerful yellow.

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!

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!

Our college option

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

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

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

Overall this seemed like a match made in heaven.

Until I brought it up to Joe.

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

Crap.

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

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

Say some prayers, peeps!

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.