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 ...

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.

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.

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!

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 ...

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.