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

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 - Blog Style!

A dear blogging friend, started doing Throw Back Thursdays on her blog.  It seemed like a good idea.  I actually had a few good blogs before anyone read me and I've been in a bit of a funk lately and I haven't written much so it seemed like a good match.

This is a blog post I originally wrote about Alan's picky eating on January 14, 2013.  It was sort of sad to re-read it and realize how little has changed in those 16 months.  Then when I went looking for a picture (and you can tell it is recent since it is in the new kitchen) you can see all the foods I list later at his spot -- with the mini Fudge Stripes in a little row! 

Oh well, the kid still makes me laugh.

Picky Eaters 

 

While I'm sure every parent thinks they have picky eaters, I strongly suspect (and would probably be willing to bet upwards of $100) that Alan tops 99% of your children!

Many kids on the spectrum are on limited diets -- the most common of which is the gluten free-casein free (no wheat or milk products) diet.  We had Alan tested for wheat and milk allergies when we tried the biomedical treatments and the results were that he was moderately allergic to milk but not at all allergic to wheat.  So we tried to eliminate milk from his diet.  The only problem with that was that milk was the only source of protein in his entire diet.  We tried rice and soy and he wouldn't drink them.  He has never let us put flavoring of any sort in his milk so we couldn't even try to hide the flavor in chocolate milk.  Score:  Alan 1, Parents 0

We next tried to eliminate lactose from his diet.  This did work.  Dairy Ease or Lactaid both taste close enough to regular milk that we can get him to drink those with relative ease.  This seemed to end his chronic (albeit intermittent) diarrhea.  Alan 1, Parents 1

We took him to "picky eaters" food class near home.  This was at a local organization that was specifically for children with autism.  He lasted two classes before the OT asked us to please not bring him back.  Alan 2, Parents 1

Next we tried taking him to a local OT center that specializes in sensory problems and has several people that deal specifically with broadening a child's palette.  The entire center has supposedly done wonders for so many local kids.  We had three different OTs work with Alan for almost a year (driving 20-30 minutes each way) and all they managed was to get him to touch certain undesired foods to his tongue.  He would not go the further step of holding the food in his mouth and they (somewhat reluctantly) admitted defeat.  Alan 3, Parents 1

"So what does he drink?" you might ask.  If left to his own devices he would only drink soda.  Sigh.  So we give him a small cup of soda and an equal sized cup of lactose free milk.  He usually drinks the soda and the milk sits on the table until he wants more soda and then he will finally drink the milk.  Sigh.  I am not sure who wins in this one so we will keep the score the same.  Alan 3, Parents 1

"So what does he eat?" you might ask.  Basically we give him four foods at a time.  

• a favorite (either Oreo cookies, a Poptart with the edges broken off or a cereal bar which we had to stop giving him when we finally figured out that the only kind he would eat were Cinnamon Toast Crunch milk and cereal bars and that was causing problems)
• a fruit -- usually apples but occasionally he will let us give him purple seedless grapes (no green or even red)
• a bowl of something -- white cheddar or cheese popcorn, corn puffs, rice cakes (cheddar or ranch only) Cocoa Puffs or Honey Nut Cheerios
• animal crackers

And that is it.  He eats those same things all day, every day and has for the last 2-3 years.  There is no protein in his diet other than the milk.  We started including the animal crackers simply as a "break food".  He would eat the favorite food until he was as wide as he is tall so we added the animal crackers on to the plate so he would be forced to eat something he doesn't really like to slow him down or provide a break.  Again, I'm not sure who wins that round so we will call it a tie.  Alan 3, Parents 1

What about when we go out to eat?  He will eat French fries and he will drink soda and that is it.  Alan 4, Parents 1

What about vitamins or supplements?  We had him on Juice Plus for several years.  He took the gummies quite willingly for a long time.  Then he started pushing them to the back of his throat and gagging himself with them and we had to take him off them.  Luckily we did have a wonderful SLP a few years ago that taught him how to swallow pills.  In fact, he is the best in the family now at swallowing pills.  He will put his entire fist of medicine in his mouth and then chug a glass of water and they all go down.  Another tie.  Alan 4, Parents 1

Several experts in the field have told me that no child will starve themselves to death and that is probably true.  However, when the alternative is to have a knock down, drag out fight with an incredibly stubborn young man who can make the whole house miserable -- is it really so awful that he eats popcorn for breakfast?

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!

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 ...

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 ...

Teaching finances to a HFA

Trying to teach Joe finances continues to be a challenge. Since he drives (and therefore has to put gas in his car) we set him up to have a debit card. I was NOT going to let any child loose with my credit card!

To give credit where it is due, Joe is fantastic about balancing his checkbook. He always records his gas purchases or bank withdrawals perfectly and the only time his checkbook didn't balance it was because he typed the numbers in the calculator wrong.

For car repairs, we usually split the cost. He does work a weekend or two a month and has some income so I don't think having him pay for oil changes or half the price of a new battery is outrageous for the free use of a car!

However, in a continuing effort to help him understand cash flow (as well as financial transactions) I frequently send him out to the store for little things.

We are getting low on Alan's lactose-free milk.
Mom: "Joe, can you run up to the grocery store and pick up some of Alan's milk?"
Joe: "Sure. That is what I'm here for." (I kid you not, that is what he says!)

Joe forgets to tell me we ran out of his favorite mouthwash.
Mom: "You can stop and pick up a few bottles after work tomorrow." (Work = his volunteer positions)
And it is done.

He is remarkably helpful that way.  Most of the time he pays in cash and I reimburse him. Sometimes this means I have to make a special trip to the bank to make sure I have enough cash on hand but DH and I figure that as more money travels through Joe's hands he will get a better understanding of how finances work.


This isn't always the most frugal option for us however. One time he bought a name brand where I would buy the generic and his answer was "but I could afford it!" Sigh. He didn't understand that even though he was giving the cashier money, ultimately we were paying for it.

Sometimes it is a pricier errand and he puts it on his debit card. He gives me the receipt and I transfer the money from our account to his. He really doesn't understand how or why this works but I feel better because I don't feel like I am trying to cheat him out of the money he has earned or been given.

Yesterday he went out to pick up a few things and the total came to about $25 so he decided to use his debit card. Fine. Then he figured that since he was low on money, he would get $40 cash back. I was trying to make him understand that either he needed to subtract $40 from his account and I would transfer $25 or he could subtract $65 and I would give him $25 in cash. Yikes. That got confusing even to me!

Then I had what I thought was a brilliant idea. I would explain fiances to him in terms of colored Legos. I told him my account was the red Legos and his was the blue. He gave 5 blue Legos to the store and I gave him 5 red Legos to pay him back and he was still even because the color of the money (Legos) didn't matter.

That actually seemed to make sense to him. But I couldn't figure out how to explain the $40 cash back. Sigh. Really it was easier teaching him the rules of the road for driving using Matchbox cars.

My escape has escaped

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

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

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

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

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

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

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

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

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

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

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

Night and Day

My boyz are as different as night and day.  We've all heard the expression ad nauseum "If you've met one person with autism, you've met one person with autism." but even the most jaded person in the world would think that two boyz from the same gene pool, raised in the same environment with the same diagnosis would have more things in common than not in common.

I'm here to provide evidence to the contrary.

Both my boys have communication problems.  Joe didn't talk at all until he was almost 3 and then started spouting words and phrases from books at a phenomenal pace although comprehension is still an issue at 18.  Alan, on the other hand, seemed to develop typically until he was about 2 and then rapidly regressed and seemed to stagnate.  Grrrrr  Just when you think you have this autism figured out, the second one is completely different from the first. 

What was difficult for Joe (potty training) happened almost overnight with Alan.

What worked so well for Joe (ABA) had almost no effect on Alan -- he just ritualized things. 

Alan goes barefoot every chance he gets (even in this picture from last December when there is still ice in the raingauge) but Joe puts on his sandals every time he needs to step on the grass because of his sensitivity issues.

Joe always has something in his hands in his toddler pictures (usually several somethings) but Alan always wanted his hands free to climb.

Joe has always been sound sensitive.  He hated fire alarms at school, he used to wear noise muffling headphones for watching fireworks (and we weren't that close) and he still wears them for cutting the grass.  Alan likes making the most piercing noises known to man but doesn't seem to care what sort of noises are in the environment.

Even for things that they both loved (their wooden toy trains) they played completely differently.  Joe would carry around a handful most of the time but when he played trains, it was to run them along the track stimming out of the corner of his eye.  Alan likes to make very long continuous trains and crash them off a high surface.

Joe is unbelievably gentle for a boy.  He doesn't like violence and has only lashed out physically a handful of times.  Alan came out of the crib headbutting.  I have a very vivid memory of telling him no about something when he was barely walking and him turning around and headbutting Joe in the back.


They both love swimming, but Alan loves the ocean and waves and Joe is skittish of critters and prefers swimming pools and his mask.

Joe used echolalia and scripting to start talking.  He would take a phrase he had heard in a book or a movie and apply it to a different situation to come up with an expression that was most times appropriate.  Alan just scripts for the stim.

Alan is a complete daredevil and climbs to the top of everything while Joe is a little bit scared of heights.

Alan has been known to elope on more than one occasion (going so far as to attempt to walk to his aunt's house 5 miles away), but Joe just leaves the situation and then comes back when he has calmed down.

Joe is a complete pack rat while Alan loves to "clean up" and has thrown out numerous things we then had to fetch out of the trash including silverware and unwanted toys.

Joe has always loved crafts of all sorts, but paper/pencil activities are torture for Alan.

Joe always slept like the dead but Alan had a more difficult time falling asleep and tended to wake up at first light.  This has improved since he has become a teenager but he is still our usual weekend alarm clock.  Trust me, it is impossible to sleep through a 160 lb. kid back flipping out of bed on the floor above you!

Alan is very motivated by "task completion".  At school, they frequently use finishing a job as the reward for doing the job itself.  We joke that this is the reason Alan gets in the ocean and starts swimming for the horizon -- he has to get to the other side!  Joe on the other hand, loves to start projects ("I am going to type all the numbers from 1 to 1,000,000.") and a few days later he loses his motivation. 

So for those people out there that do not like the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) changes to the definition of autism, I would like to point out that I think in many ways this will be more accurate.  Under the DSM-IV, both my boyz are "PDD-NOS".  This does not even begin to cover their complex differences.  At least with DSM-5 they will be level 1 (Joe) and level 3 (Alan).

Rob Growski of Lost and Tired said, "The most dangerous mistake in Autism is generalization."  He's got that right!

Theme Thursday: Link to an old post

I’ve always wanted to participate in one of the clever themed blog hops I have seen but have never felt like I have anything interesting to contribute and I try to avoid writing when I have nothing new or interesting to say.  Of course it is eminently possible that I usually have nothing new or interesting to say, but we will pretend for a moment that’s not the case!


But this week the “theme” for Theme Thursday is to link to an old post.  Now those I have!



I decided to link to one of my favorites Spotlighting Joe's Creativity.  He is an incredibly talented young man.  

And wishing a Happy Independence Day to all the American readers out there.