Thursday, August 28, 2014

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 ...

Friday, August 22, 2014

Why the cure analogies are invalid

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

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

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

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

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

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

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

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

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

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

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

So yes, I am still hoping for a cure.

Saturday, August 16, 2014


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!

Saturday, August 9, 2014

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!

Thursday, July 31, 2014

TBT -- More Monkey Pictures

Welcome to Throwback Thursday -- blog style!  This post originally ran on December 13, 2012.  Here you can see why we finished our basement the way we did!

More Monkey Pictures

As promised ... more Alan monkey pictures!

See the plywood on the left side?  That is to protect
wires and copper tubing that he was trying to
use to climb.  Thank goodness DH is handy!

scaling the support pole ...
the kid has "monkey toes"

Climbing up the basement banister
Note it is now a 2"x4" because he
broke the original banister

I love that he does this with a DVD box in
his hand.  He can go all the way from
the basement to the main floor without
touching the actual stairs!
trying to climb through the deck stairs
... he didn't fit!

Squeezing into a cubby in the basement
Another tree he likes to climb at his
aunt's house ... several people
observed that the statue is probably
watching over him!
The kid's flexibility is amazing!

My BIL commented that he looks like the
vulture on Snoopy's doghouse!

More balance beam work

High up in the tree

He had been trying to climb the shelves in his closet.
Note: the bottom left clothes bar has already been
removed ... so have the closet doors but that was
years before!
Somehow he managed to shimmy up on the shelf

crawling across for variety

not sure how he got up there in the first place

oh, maybe like this!

Doesn't everyone relax on top of the monkey bars?
just hanging out

Inside he also resorts to bed burrowing

Stair diving ... headfirst on his back!

Hiding in "the tunnel" as he calls it

Tuesday, July 29, 2014

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!

Friday, July 25, 2014

Not a typo

I just went for a jog.  Amazingly, that sentence is not a typo.  Anyone that knows me well, knows that the words "Julie" and "jog" are never used in the same sentence unless there is a negative in there as well.  (i.e., "Julie never jogs unless she is chasing Alan.")

I have been trying to get back in shape since my stupid foot surgeries.  Unfortunately, as I age that is harder and harder (as opposed to my belly which is softer and softer ...)

This morning was one of those rare beautiful mornings in the midwest.  It was cool and slightly cloudy (so I didn't need sunglasses) and just perfect running weather.  (Once again, anyone that knows me knows that "perfect" and "running" are not ever used in the same sentence.)

Hm, is it possible I will keep up with my exercising this time?

Oooooo, I have mini kits to complete ... and here's the first one!

Probably not.  But still better one day than none, right?

 photo FF_zpsc6f74f35.jpg