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 ...

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.

TBT - What Might Have Been

Here is my version of Throw Back Thursday -- blog style!  (Or TBT-BS as I like to call it!)

This post originally appeared January 8, 2013 and it is still true today.

What Might Have Been

Most of the time I do not have an inferiority complex about staying home.  I have a college degree and I always thought I would go back to work in my chosen field after Alan was in school.  That said, both DH and I really wanted one of us to stay home when the boys were young.  As I had worked fewer years than DH and made less money there was never any debate about which of us would stay home.  I have never felt that DH looks down on me for staying home.  On the contrary, he has always been very supportive and occasionally jealous.  Sometimes I get jealous that he "gets" to go to work because the boys can stress me out but other days, I realize I am lucky because I get to work on my hobbies or go out to lunch with friends or whatever.  So overall we have a good balance, I think.

Then something happens ... in this case my Dad invited me to join LinkedIn.  This is a professional network and as I am not working in a profession I resisted for a long time. Then a fellow hobbyist invited me to join her professional network and I accepted.  So naturally I was curious as to what had happened to my fellow classmates.  OK, now I have a bit of an inferiority complex.  Actually it is less that than the jealousy of how my life might have been.  If I hadn't had two special needs kids would I now be manager of this or senior director of that?  Maybe.  But I might also be divorced as the boys' problems have definitely brought DH and I much closer.  We really have to pull together at times in order to survive.

I read this blog recently (Autism Strains Yet Strengthens a Marriage) and totally understood it.  Yet while reading all the comments below the article I was appalled.  People actually made comments that hinted that these people were living in Hollywood.  They never said their marriage was perfect and nor would I say that about mine.  But the title alone says a lot.  Raising special needs children is a strain but if you work together it can also strengthen a marriage.  But (and this is huge) it takes two people who are committed to making it work.  It can be hard work but with a sense of humor and a heck of a lot of stubbornness, it can happen. 

Sometimes DH and I like to joke that we could never get divorced because we would spend way too much money in a custody battle -- only in our case we would be fighting to give custody to the other person!  A lot of marriages do end in divorce especially when there are special needs kids involved.  Sometimes one parent or the other cannot deal with the special needs and that is really unfortunate.  In general I think parenting is easier when you can tag team and that is even more critical when the children are high maintenance.  

So today while I might wonder what it would be like to be a big shot in the working world, I am also thankful that I don't have to be out there trying to do it all alone.

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!

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?

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!

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!

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 ...

Supposed to be a happy occasion ....

Any fan of Monty Python will undoubtedly get the reference in the title, but for those of you who don't find bizarre British humor funny, here is the clip ...

This past weekend was my brother-in-law's stepson's wedding.  For all intents and purposes, I consider him my nephew that I only met 6 years ago, and I dearly love his new wife.  I have been looking forward to the wedding for some time now.  

For a little background, let me say that Joe went to his uncle's second marriage 6 years ago and had a fantastic time.  He danced up a storm and charmed the whole room.

This most recent wedding was slightly less successful.  Now I won't be telling you "who killed who" (after all, everyone did survive the event!) but it just wasn't as smooth. 

This was a camp weekend and we sent Alan so we wouldn't have to worry about a babysitter, but Joe elected not to work and to attend the wedding instead.  Hindsight being what it is, DH and I should have "encouraged" Joe to work.

The actual wedding was relatively short and the minister did a fabulous job.  Afterwards we went and hung out at my in-laws' house and that was also painless.  So what was the problem, you might ask?

The reception.

We are walking in and I said, "I'd really like to get a picture of the three of us."  (After all, how often does Joe wear a suit?!?!)  Joe's response?  "Don't you have enough pictures of me at home?"  Okay.  He was obviously in "a mood".  He finally agreed to take ONE picture.  Unfortunately, I put my arm around him.  I was told in no uncertain terms to NOT do that.

Sigh.

Then there was the food.  Joe is nowhere close to Alan when it comes to being a picky eater, but there are certain things he will not touch and one of them is cheese (unless it is Parmesan cheese or on a pizza).  Even though he loves potatoes (and has even been known to eat potatoes with some cheese hidden in their depths once or twice) he overheard my nieces discussing how there was cheese in the potatoes.  It wasn't happening.  Then there was the pasta.  The kid LOVES pasta and it was just Pasta Alfredo with broccoli.  He always eats "pasta with white sauce" at home and he likes broccoli (it is one of the few veggies that he usually likes) but oh, no, not combined.  Even when I ended up giving him my leftover roll at the end, he wiped the little dab of Alfredo sauce on his napkin before eating it.  Sigh.

At this point I left our table to go talk with some of DH's cousins.  DH did point out that maybe I was being difficult too.  Probably.  I have often said that the reason Joe and I spark so much is that we are so similar in personality but so different in tastes.

DH did ask Joe the next day why he even wanted to go when he seemed so determined to not have a good time.  Joe's response?  "Well it had been a while since I went to a wedding." 

And it will probably be a VERY long time before he goes to another one!!!!

The status quo is nice ...

It's easy to see how the cast has gotten dirty!

Things have been quiet around the Sparks household lately but you won't hear much complaining either!

Unfortunately Alan still has his cast mostly on (I had to cut off the part that covered his palm as it was broken and snagging on things) but we opted to not take it off at the 4-5 week point.  We all knew (including the doctor) that a splint would not stay on.  Now the cast is scheduled to come off at just over 8 weeks from when it went on.  The cast itself is beyond disgusting.  The teenage boy who hasn't had a real bath in over 6 weeks is pretty gross too.  The walls have scratches everywhere from the cast.  I really had not planned on repainting the whole house in spring, but it is looking like there will either be massive touch-ups or new colors in our future.

We do now have good communication with Alan's aide.  Our biggest concern when we started at his new school seemed to be the lack of communication (something at which his teacher of the last two years excelled!!!) but we now have a communication notebook that goes back and forth.  It seems a bit archaic after the e-mails of the last few years, but it is consistent and informative and that is all that is required.

The branches of a Bradford pear are so soft he can rip them off!

Joe is still volunteering at two different places but one of his days at the nursing home was cut.  This is probably because his job coach is having his own hours cut by the government shutdown.  But as DH's job is not in danger from the shutdown, it is hard to complain that Joe's volunteer hours are being cut.

A miniature chandelier I made this month

DH and I have been keeping busy by working out and trying to eat healthier.  We both know we are larger than we are supposed to be and periodically one or the other of us tries to be good but we both know that we have the best results when we are in sync with each other.  We've been using www.myfitnesspal.com and it has actually been sort of fun.  However, I will not be writing about workouts or diets other than in passing because I usually find those rather boring to read.  Of course there are always exceptions but if I am not interested in reading about it, I'm not going to write about it!

I've been reading more (although nothing intellectual -- I read to escape my life!) and trying to snag a little time to work on my minis.  I haven't even been reading all the blogs I used to read although I'm trying to make time for favorites.

DH and I also got to have a movie date night this past weekend and saw Lee Child's The Butler.  I highly recommend it for everyone.  It is truly a powerful story while still being humorous and (it seemed) historically accurate.  Of course halfway through the first scene with Ronald Reagan (played by Alan Rickman) DH leans over and says "It's hard to see Snape as president" and I had to work pretty hard to not giggle through the rest of his scenes.

Alan has conquered a few new trees with his cast, but otherwise it is just the status quo around here ... and that is nice!

When "failing" is good

Joe had his first "real" job interview yesterday and he didn't get the job, but we've changed directions and everyone is happy about that.

Last spring, we had talked to the lead counselor at the special needs camp that he and Alan attend in the hopes of finding a way for Joe to attend camp without wasting a counselor on him.  (DH and I did not want to give up our "kid free" weekends!!)  The counselor knows Joe and when we talked to him he suggested the possibility that they could in essence create a position for him.  The camp folks really came through and late this summer, they hired him as the Assistant Arts & Crafts counselor!  Best of all it is a paying job.  Joe was very excited when he got his first paycheck!!

All decked out and ready to go to "work"

In addition to that, Joe is volunteering one day a week (for 3 hours) at a local hospital.  He also starts today volunteering two days a week (again for 3 hours) at a nursing home and he had been volunteering at a thrift store as well (which does not need him for the rest of September since they are doing an inventory) but he should be able to return there in October.

Any of the three volunteer positions could potentially lead to paid employment and frankly, that is the sort of job where Joe will shine.  He already had a very favorable review at the hospital where he has only been for two months.  I am sure the nursing home and thrift store will quickly realize how helpful and smart Joe is without him having to worry about first impressions. 

Sounds win-win to me!

But back to the failed interview, he had applied for several "bus boy" positions and this interview was with one of the restaurants.  When they called to ask him to come in to interview, the manager told me they were primarily interested in weekends.  I told them about the camp, but according to the manager "we could work around that".

Of course his definition of "working around that" was to have Joe quit his camp job (which he likes a lot) for a job he might not like.  Um, no.  Not going to happen.

So yesterday afternoon his job search woman, Joe and I had a long talk and decided to temporarily abandon his job search. 

This morning Joe came downstairs and informed me that since this was going to be the way of things for awhile he was going to start setting his alarm so that he could be sure to get up on time for his "jobs" (he had been relying on me to wake him up on time). 

I couldn't be happier that he didn't get the "real" job yesterday.

Two graduations and some pictures

Joe is now out of high school.  He has a diploma and a lead on a job.  He opted not to go through the graduation ceremony and I am fine with that -- actually I encouraged that.  

 

We had a little party for him on Saturday -- mainly family and two friends.  His one friend, Harris, had a great time playing the miniature golf course with Joe.   






 

His cousin who came to visit played some ping pong with him the night before.

Alan's last day of 8th grade is today.  He had a little "graduation" ceremony on Tuesday and he didn't walk across the stage and wouldn't wear the hat but he happily accepted his "diploma".  

We are definitely going to miss his fabulous teacher although we are lucky enough to have her for summer school as well!



So life is good and calm in the Sparks household and there is nothing interesting to write about.




Of course as soon as summer starts I'm sure some things will crop up.  Meanwhile I thought I'd just share a few photos ...

Here are my "bookends" -- DH on his iPad and Alan on his hanging out in our bed relaxing!



 


And Alan combining two of his favorite activities -- sitting in the tree and chewing his toes.  I originally called it "Pedicure in a Tree" but a friend called it "Tree Yoga" and I think I like that name even better.






I'd also like to do a link up, but I am not sure how to do that.  So feel free to share your blog link in the comments.

Happy Thursday!

Trying to look on the bright side

Today is Joe's last day of high school.  When I was younger and so much more naive I used to dream about this day.  "If only I can get him to graduate then _________" (fill in the blank).  Now that I am older and wiser, I realize this is just another twist in the road.

A few months back, Joe was accepted into the VR program at his school.  This is a program that aims to get special needs graduates employed after high school.  They take them on several job assessments and the goal (as I understood it) was to find a company where Joe wanted to work and could be successful as well as a company that wanted Joe.

So why, did the assessor take him to places that he didn't want to work?  Why did she spend so much time telling me why the employer wouldn't want Joe?  If the employer is that difficult to work for, why is she bringing potential special needs employees there?

Most of her complaints against Joe were rather minor.  She tells him to put some cans on a shelf.  He says "Are you sure that is where they go?" and she thinks he is undermining her authority.  Really?  Has she ever talked to an autistic person in her life??  Joe questions everything.  That is just the way he is.

She claimed he was too negative.  This is a legitimate claim against many on the spectrum.  But not Joe.

This is the child that when my sister's cat ran away, he tried to console my sister that she still has another cat.  When I'm running late and am wearing my workout clothes, he tells me that "at least you had a chance to take a shower" when actually I didn't.  When my car was totaled it was "at least we still have two other cars."  This young man could be the poster child for looking on the bright side.

To the age old question of "Is the glass half full or half empty?" Joe would probably respond "The important thing is that you have a glass!"

So now I am facing graduation with an unemployed 18 year old.  I am terrified.  I am sure he will eventually work somewhere although hell will freeze over before I let it be the sheltered workshop she thinks he needs.  The kid drives for crying out loud.  Okay, deep breath mama bear.

At least I have Joe.

What Might Have Been

Most of the time I do not have an inferiority complex about staying home.  I have a college degree and I always thought I would go back to work in my chosen field after Alan was in school.  That said, both DH and I really wanted one of us to stay home when the boys were young.  As I had worked fewer years than DH and made less money there was never any debate about which of us would stay home.  I have never felt that DH looks down on me for staying home.  On the contrary, he has always been very supportive and occasionally jealous.  Sometimes I get jealous that he "gets" to go to work because the boys can stress me out but other days, I realize I am lucky because I get to work on my hobbies or go out to lunch with friends or whatever.  So overall we have a good balance, I think.

Then something happens ... in this case my Dad invited me to join LinkedIn.  This is a professional network and as I am not working in a profession I resisted for a long time. Then a fellow hobbyist invited me to join her professional network and I accepted.  So naturally I was curious as to what had happened to my fellow classmates.  OK, now I have a bit of an inferiority complex.  Actually it is less that than the jealousy of how my life might have been.  If I hadn't had two special needs kids would I now be manager of this or senior director of that?  Maybe.  But I might also be divorced as the boys' problems have definitely brought DH and I much closer.  We really have to pull together at times in order to survive.

I read this blog recently (Autism Strains Yet Strengthens a Marriage) and totally understood it.  Yet while reading all the comments below the article I was appalled.  People actually made comments that hinted that these people were living in Hollywood.  They never said their marriage was perfect and nor would I say that about mine.  But the title alone says a lot.  Raising special needs children is a strain but if you work together it can also strengthen a marriage.  But (and this is huge) it takes two people who are committed to making it work.  It can be hard work but with a sense of humor and a heck of a lot of stubbornness, it can happen. 

Sometimes DH and I like to joke that we could never get divorced because we would spend way too much money in a custody battle -- only in our case we would be fighting to give custody to the other person!  A lot of marriages do end in divorce especially when there are special needs kids involved.  Sometimes one parent or the other cannot deal with the special needs and that is really unfortunate.  In general I think parenting is easier when you can tag team and that is even more critical when the children are high maintenance.  

So today while I might wonder what it would be like to be a big shot in the working world, I am also thankful that I don't have to be out there trying to do it all alone.

The Silver Lining

While an accident is never a good thing, it can really affect a special needs family.  Yesterday, I was t-boned and my car was totaled.  I am, for the most part, fine -- just really sore.  So often it is hard to see the silver lining for the cloud.  This was a pretty big cloud after all!!

But while talking things over last night with the DH, I really got to thinking about how important each little cog is to the family machine.  While I do not consider myself to be a little cog (I am actually referring to the car) it is just amazing when you consider how every part of your life impacts every other part.  One of DH's co-workers was in a very serious accident less than two weeks ago and has multiple broken vertebrae and other bones as well.  He has feelings in all his extremities and his prognosis is actually relatively decent but he is still in the hospital and might be for months.

DH did say he wasn't sure how he would handle everything without me.  I thought that was pretty sweet as so many times I feel like my part of the household is so much smaller than his.  I know I do a lot, but I also have a lot of free time during the day to do what I like.  I spend a lot of time on the computer, doing my hobbies, reading and having lunch with friends.  But as he pointed out, if I were in the hospital like his coworker, or if I had lost an arm or a leg or something equally extreme, him trying to deal with that as well as the boys on a daily basis and keeping a fairly demanding full time job would become next to impossible.

Many, many people have pointed out to me that cars can be replaced and that the important thing is that I am (mostly) OK.  I need to focus on that and quit being so hard on myself.  The timing might stink, but really, when is a good time to have an accident??  My fabulous husband is the silver lining in this particular cloud.

Grateful for a Diagnosis

I never thought I would say this (let alone think it!) but I am so grateful today for my sons' diagnoses.  

Joe is taking a class on Sex Ed from a local company that specializes in special needs kiddos.  Most of their clients seem to have MR or something similar, but they are working to branch out into autism.  Joe has taken a couple of art classes there and liked them well enough but he was always the highest functioning kid there by far.  When they came out with the info on this class DH and I were all over it.  Special needs kids are much more likely to be sexually abused than their typical counterparts and Joe is so naive about things (and uninterested in talking about them) that we figured this was perfect.  As well, there is a young lady at his school with whom he is quite smitten and we figured before we let him actually "date" he should have a clue about was and wasn't appropriate.

The first two classes were relatively uneventful and didn't prompt him to want to discuss things at all.  Sigh.

Then last night a new student walked in and lo and behold it was Tina, a girl with whom Joe had gone to grade school and upon whom he used to have an enormous crush!  They had e-mailed a bit earlier in the calendar year and upon snooping through the e-mails I became even more convinced that this kid needed some boundaries.  She "broke up" with him in April and at first he was quite upset but then he seemed to get over it.  This fall he became smitten with Helen and we were thrilled.  Helen is a sweet girl and seems just Joe's speed and we always thought Tina was waaaaaaaaaaay over Joe's level.  

So Tina's mom called me last night to talk about the fact that both kids were in the same class and she told me a little bit about why she had enrolled Tina in the first place.  Yikes!  Tina was meeting guys at a local park after telling her parents she was going to church youth group and so her driving solo has been cut.  She was sexting and meeting guys in online chat rooms and several other dangerous behaviors.  But ... since she doesn't have a formal diagnosis (other than ADHD) she doesn't qualify for a lot of the services that they are now trying to get.  

The whole conversation made me so thrilled with some of the choices we had made for Joe over the years.  We opted to send him to a rather large public school with a lot of support instead of a small private school like Tina attended.  He has done the work program through school and has been accepted into the vocational job placement program upon graduation.  He has participated in a volunteer program for the last few summers and was told by one of the volunteer sites that they were likely interested in hiring him after next summer if he worked that hard again.  We hope to enroll him in the community college in the fall and have him take a couple of classes to hopefully improve his future employ-ability.   In general, his outlook looks good.  Maybe he doesn't have a scholarship like some of his typical peers and maybe he isn't even going to attend a four year college, but he is happy, mostly trustworthy and generally a good kid who will most likely be gainfully employed within a few months of graduation.   

Overall, his future looks so much brighter than Tina's mainly because of his diagnosis and the choices that we made that got him the support he needed when he needed it.  There but for the grace of God go I ...