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.

On the bright side ...

Joe starts every other sentence with "Well on the bright side ..."  OK, not really, but he does say it a dozen or so times a day.
 
I once said that if Joe were asked if the glass was half full or half empty his response would probably be "At least you have a glass."

When he found out that he couldn't participate in an event he was excited about until he turns 21, his comment was "Well, on the bright side, I will get to do it in 2.5 years."

When his aunt's favorite cat ran away he told her, "Well at least you have another cat."

After finding out he can't have popcorn for 2 weeks after getting his wisdom teeth out, he says, "Well at least I won't ever have to have my wisdom teeth out again."

When he had to leave camp early because he got sick, he told me, "Well at least I got to stay for most of the weekend."

When he got a wrong number phone call he told the caller, "Thanks for trying."

In the process, he has turned me into "Happy Heidi".  

When a friend posted on Facebook about her daughter hitting the mailbox her first time driving by herself, my response was, "At least it wasn't a person."

When another friend was complaining about the heat last summer (and I am NOT fond of summer) my response was "At least it isn't as bad as last summer."

When someone was complaining about the endless snow and snow days ... oh wait, that was me, never mind.

When did I become such a Pollyanna?!?!?!  

Well on the bright side, I have great company!

How a home improvement is like raising a child with autism ...

We are in the process of remodeling our kitchen.  By "in" the process, I mean the planning portion of the process.  My goal would be to have it done by the end of spring.  DH would like it done before fall.  Clearly we have different expectations!

However, the overall process of a major house remodeling project is so similar to raising special needs children that I thought it was funny. 

It all starts with someone noticing a deficit.  Like autism, one of us (in both cases, me) saw a problem a bit before the other.  I've been wanting to redo the kitchen for years but over the last few years, DH has (albeit reluctantly) come to the same conclusion.

So first you start looking for options.  You exhaust the internet for any and all sources of information.  What kind of cabinets do you want?  What kinds of therapies or treatments are out there?  Who do you want to do the installation?  What is the best school?

Then you start asking your friends about their experiences.  A neighbor who recently remodeled will warrant a visit.  A friend whose child was diagnosed a few years ago will get a phone call or an e-mail.

Then you wonder about trends.  Everyone else is getting stainless steel appliances.  Should you still get them because they look nice or should you go with your gut and get black because you know you won't clean them often enough and they will always look dirty to you?  Many people have had such great results with the GFCF diet but your child will make your life a living hell if you try to eliminate all sources of gluten and casein.

And there is the unwelcome advise.  We haven't gone to every kitchen store within a hundred miles and we haven't tried every treatment ever invented.  That isn't the way we operate.  We find what we like and will make the most of it.

Then there are the parts that haven't happened yet where I can see similarities.  I remember all too well the "revolving door" of home ABA.  It helped Joe so much but I hated the lack of privacy.  Yep, that would be the installation.

Then there is all the time that we will have to either eat out or get very creative with eating in.  That is a lot like the holidays with Alan.

I won't get into the economic similarities but it is safe to say that both will be pretty expensive.

But despite my opening paragraph, DH and I are in sync for this project like we are for raising the boyz.  We each compromise on a few things but overall find we like most of the same things.  And like autism there are pros and cons. 

And like autism it is sometimes very hard to imagine the end result in the early stages ...

Joe's new toy

For Christmas this year we told Joe that we weren't buying him a lot of things, but rather one expensive thing.  We asked him if he would rather have some sort of tablet or a smart phone.  Since he is really into movies, we thought he would pick the tablet.  But not for the first time, he surprised us and asked for a smart phone because he really wanted a camera.

The phone he got is certainly not "high end".  But considering that for 4 years all he has had is a "pay as you go" flip phone, this was a huge step up in technology for Joe.

Unlike most teenagers, technology does not come naturally to Joe.  We had to have his cousin (who is three years older than him) come over to visit to teach him how to text.  She did a great job and for years he would keep in touch with us via text.  But so many times we had bizarre communications that might have been cleared up with a picture so I was secretly pretty happy that he picked the smart phone.

The conversation that sticks in my mind is when he called me to ask me what flavor of whipped cream I wanted.  Um, flavor?  Yeah they have blueberry and strawberry.  Really?  Turns out they have different fruit pictured on the regular and low-fat versions.  Wow.  The things you do not notice until they are described to you by a very literal person.

So while many parents of teenagers probably hate when their offspring are obsessed with their phones, I am (not so secretly) pleased.  It is so "normal" to see Joe reach for his phone first thing in the morning to see what is up.  Of course responding to people (especially his aunts, uncles and grandparents) would be a real plus, but any step forward in communication is still a step forward.  He loves that his calendar is on there and that he doesn't have to write himself reminders anymore.

Last weekend he was texting with two different girls (both "friends") and he joked that he was "Mr. Popular".  Oh my.  DH's response? "I wish I'd had that problem when I was his age ..."

My new craft room

I always felt like we let Alan take our basement hostage.  We have a HUGE basement and except for two small areas that were closed off and capable of being locked (one used as storage, the other as our work room) we've always let him have the run of the place.  In Our Redneck Home Improvement we blocked his access to all the piping, wiring and ducts.  (Of course he's spent almost no time down there since the ceiling was installed, but that is another story ...)  Stage two of the project was to give me a craft room and give DH back his work space.



This is where I used to work.  OK, it is messy but even when it was organized, it was tight on space especially once Joe joined me in that back room.


 

 

So we took this space, moved the pool table,

and turned it into this ...

Now I have a table to keep my sewing machine out all the time so hopefully I'll actually complete my sewing repairs in a timely fashion while Alan is still wearing the same size clothing.

There is even space for Joe to work on his models.  

And best of all .. DH got his work room back AND now has space to play his games.  Now we just have to get Alan back down there with the rest of the family ...

Snow and Snuggling

Like much of the midwest, we have been snowed in a lot over the last week.  

Alan climbing up the cardiac hill ...

Really, all things considered, Alan has been pretty good.  The roughest day was Sunday because that was the day we actually had dense, driving snow all day and we didn't go anywhere.  Starting on Monday we have been back to at least going out to lunch and then going sledding at least once a day.

We back to a big hill that is common ground.  Alan loves sledding and for the most part can do it independently (thank goodness as one or two trips up that hill would be enough to give this out of shape 40+ lady cardiac arrest!) but it is yet another time when I feel his differences keenly.  After all, how many parents of 15 year olds are sitting outside watching them sled??  I could probably watch from inside the house, but by the time I would realize there is a crisis, get my snow gear on and get out to intervene, things would probably have reached a crisis point.

Naturally, his favorite way to sled is headfirst on his back.

Mostly I just have to explain to the other kids why Alan is ignoring them.  (After saying "Hi!" five times in a minute wouldn't you think a kid would give up?)  Occasionally I also have to remind Alan that he can't sit at the bottom of the hill and finish reciting his latest script when the other kids want to sled.  His OCD and need to finish the scripting seems to be worse, but that might be due to the fact that he has now been off school for three full weeks and mom just can't do structure like school can!


On the bright side, cold weather brings out Alan's cuddly side.  He is really quite a "snuggle-bug".  Alan's nickname since he was a baby has been "bug".  His real name (like his middle name, Alan) sounds dumb with a "-y" at the end so that has never been a nickname for him.  And hence, he has always been "Bug".  When the weather is cold, he likes to remind us frequently how much he likes to snuggle.

The last picture (taken by Joe) was done at my request.  He made sure to take it with my camera (instead of his new smart phone camera) because "snuggling like that is a baby thing to do" (according to Joe).  Huh.  He is still struggling to understand what is and isn't age appropriate.  I told him that there was nothing wrong with snuggling but he wasn't buying it.

Oh well.  On the bright side, at least one of my boyz still likes to snuggle!

Our Redneck Home Improvement or How I Spent My Christmas Break

I sit here late on New Year's Day and I am exhausted but it is the good kind of exhausted that comes from accomplishment.  DH and I got so much accomplished during the last 3 days it isn't even funny.

First off, a little background.  I haven't blogged in ages.  Prepping for Christmas, Alan off school and just the day to day challenges have left me with little time and no inspiration.  We had a good Christmas -- very simple -- and there were no meltdowns.  Historically, holidays are tough on the boyz and more than a few have been memorable in a bad way. 

But that isn't to say that Christmas was "incident-free".  We were sitting at dinner and we heard a loud crash from the basement.  When we went down there, we discovered that Alan had toppled the old kitchen table we had sitting down there.  Naturally there was a recently watered plan on top of it and all our hats and gloves from the recent snow were scattered all over and it was all a HUGE mess.  Yuck.  When DH looked closer (he is good about that!) he discovered that one of the wires for our internet was down and mostly stripped.  Sigh.

This is our basement last year. On the right is the  climbing platform that DH built for Alan a few years ago.

Alan was thrilled that Dad had put the climbing bars back up!

Our basement is unfinished.  With the rate that Alan wrecks things, that always seemed the best route.  DH had covered most major duct work, piping and wiring with plywood to limit Alan's access but somehow the little sneak kept finding new things to wreck.  With both of us being engineers, we are way too practical to finish our basement ceiling with drywall (this gives you no access to critical stuff) and a drop ceiling is completely impractical since Alan would dismantle that faster than we could install it!

It was Joe's birthday but we kept the kid busy!

Of course, he is a typical boy -- playing with power tools is fun!

DH had a great idea and said "Let's cover the whole ceiling with plywood.  We can still take down sheets if we need access but it will be more uniform and block Alan's access to all the critical stuff."  He proposed this on Friday.  On Saturday we sketched out the basement and figured out how much lumber and plywood we would need and I went out to the hardware store to place the order.  We had plans all day Sunday.  The lumber showed up late Monday morning and by Wednesday evening we had 3/4 of the basement ceiling covered. 

All this in less than a week! 

Mostly done.  I like it.  It reminds me a bit of a cabin in the woods -- but that paneling has GOT to go!

I can never complain about DH being one of "those" husbands -- the kind that starts a million project and never finishes one, or worse, the kind that only dreams but never does any kind of home improvements.  It may not be a fancy basement -- far from it!  But it is useable, practical and mostly complete!