List of thanksgiving

I am thankful this month, I just decided not to bore my Facebook friends by posting things daily.  Not that I'm bored reading the thankfulness posts that my friends write -- I actually enjoy them.  Who knows why I do what I do, but that is the way of the world.  So in no particular order, here are 25 things I for which I am thankful ...

#3 My miniature Thanksgiving meal

1.  My husband.  OK, I lied about no particular order.  This is always number 1 for me.

2.  The boyz.  They are quirky, weird, stubborn, funny and sweet.  Although I wish they did not have autism, I still am glad I have them.  They have improved me as a person.

#2 My crazy kids

3.  My minis.  Having a hobby really makes life more beautiful.

4.  My kitty.  Diesel frequently makes me laugh and loves to be petted.  He isn't into being held, but that is OK.  He still makes me feel loved.

#6 Me with my sisters

5.  My nieces.  I have four smart, beautiful and just plain nice nieces.  Although I am still glad I had boyz, I do love watching these four grow into wonderful young ladies.

6.  My sisters.  I have two fantastic sisters.  The one in town frequently watches the boyz and the one out of town lends an amazing amount of moral support.

7.  My in-laws.  I have the best in-laws in the world.  Although they do not always agree with our choices, they respect them and again provide an amazing amount of moral support.

My inlaws

8.  My parents.  I do love them even when they drive me crazy.  They have given me a wonderful blueprint for marriage and faith.

9.  My faith.  Although I sometimes question what God has given me, I do know he is there to help.

My parents

10.  Friends.  I have some fantastic girlfriends (and guy friends) from all aspects of my life and they mean more to me than they will ever know.


11.  Our country.  I live in a wonderful country.  Although I hate "politics" I respect and appreciate the military and our freedom.

12.  Did I mention my husband?

13.  Doctors and modern medicine.  Although the cause of autism has not been pinpointed (personally I believe there are multiple causes), I cannot imagine my life without the boys' medications and their doctors. 

14.  Air conditioning.  Even though I am not using it at the moment, I would not survive a summer without air conditioning!

15.  Books.  There is nothing better than escaping into a good book.

16.  Movies.  Except possibly watching a good movie.

17.  My neighbors.  After the hateful letter that grandmother in Canada received, I am once again thankful that no one has ever done anything remotely that mean to me.

18.  My health.  I hear so many people that have physical aches and pains.  While my feet might not be pain free yet, they are on the way and my "problem" could be fixed.

19.  Chocolate.  'Nuff said.

20.  Food.  Maybe this is silly, but I am thankful that food is so plentiful that I have a weight problem.  I much prefer this to the alternative.  I still don't think I can be thankful for exercise but maybe someday ...

21.  I am very thankful my left foot healed a lot faster than my right foot!

22.  Schools.  The boyz have been in every style school imaginable (except homeschool) and without fail we have had some amazing teachers.  Many I am still thrilled to call my friends.

23.  Respite providers.  We try to have at least one date night a month and without some of the amazing ladies I've met, this would not be possible.

24.  Social networks.  I can't believe all the people I have met via Facebook and Google+.  I have also reconnected to a bunch of old friends.  All I have to do is turn on my computer in the morning and I have a bunch of friends to see.

25.  And last but not least, my husband.  He is my best friend and a wonderful dad.

So what are you thankful for this month?

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 ...

Thank goodness for boyz ... except today!

I love my boyz beyond belief -- their autism, not so much -- but just the fact that they are male is awesome!  Most days.

 Most people have an idea before they have children of what boyz or girls are "like" and I am no exception.  I clearly remembering wanting no more than one boy.  I had one brother growing up and several of my cousins and friends had similar family arrangements and they worked pretty smoothly, I thought.

I knew I did not want multiple boyz.  My husband only has a brother and my brother-in-law has two brothers and no sisters and a family we were close to growing up had three boyz and one girl and the stories and memories terrified me.

DH loves to tell the story of his brother giving pointers to the neighborhood boy on the best way to beat up DH.  Then there are the stories of the summer that DH finally caught up in size to his older brother.  World War III is usually used as the analogy and all I can think of is my poor, sainted mother-in-law -- but that is another whole blog post!  I remember going over to the house with the three boyz while I was growing up and it totally morphed my brother.  He was sweet and funny most of the time but we'd go over to their house and he would get into fart contests with the other boyz and all that gross "boy" stuff.  No way.  I had decided that was NOT for me.

But when we started thinking about a family, all I could think about was having a boy.  I had four nieces and no nephews and my brother had died shortly before my wedding and all I could think about was a baby boy.  I wanted a boy!  Everyone always says "you will love the baby no matter what the gender" but I knew I really wanted that boy.  Boyz (plural) still scared me and if I knew my second child was going to be a boy, I probably would have preferred that my first be a girl, but since nothing in life is certain, I just wanted that boy.

Lo and behold, Joe was born and there was much rejoicing.  Both sets of grandparents and mom and dad were all thrilled.

Joe was absolutely the most beautiful baby EVER (and I had numerous strangers come up to me in public to reinforce that belief) but he wasn't always the easiest baby.  It took me a long time to decide to have a second baby.  DH wanted them closer together, but I was thinking 10 years apart was about right!  The thought of two boyz no longer scared me.  I just wanted a "typical" child.  Ha!  Does karma have a heck of a sense of humor, or what?!?!?   At least Alan was a much easier baby!!

So back to why I am thankful for two boyz ...

1.  Boyz are tough.  I have a dear friend that has a daughter Joe's age.  They both got their braces at similar times.  Sweet girl would be in the nurse's office several times a week for Tylenol.  Joe never asked for pain killers.  In two and half years.  Tough kid.  Alan cut his head open and I found out when I found the bloody washcloth he used to try to clean himself up.  Even tougher kid.  Thank goodness for boyz.

2.  Boyz consider shopping to be a chore which is also how I look at it.  I never have to take them shopping to cheer them up!  Thank goodness for boyz.

3.  Boyz' toys are much better than those specifically "for girls".  I hate the color pink and find changing a Barbie's clothes or matching her accessories to be boring.  But building a railroad track?  That is fun!!  Thank goodness for boyz.

4.  Boyz' books are better.  I'd much rather read Percy Jackson or even How to Train your Dragon than The Twilight books any day!!  Thank goodness for boyz.

5.  Boyz are usually lower upkeep.  They will never want their hair highlighted, a pedicure or the latest handbag.  A suit for prom is a lot easier than finding the "right" dress -- although it might cost as much.  In general their clothes cover more surface area, too!!  Car insurance is more for boyz, but a wedding is a lot more.  Thank goodness for boyz.

6.  Drama is definitely lower with boyz.

In case you missed all the clues, I'll spell it out.  I am not a "girlie" girl.  Despite my obsession with miniatures, I don't care for most things "feminine".  I am an engineer by degree.  I love jeans and t-shirts and my boyz.  So why is today different?

Today is the day I cleaned the bathrooms.  Let's face it -- boyz miss.  A lot.  An awful lot.  Yuck.

Little Joe

Looking back on Joe as an infant, it is easy to see he had autism.  Of course DH and I had very limited experience with babies so to us, he was just "Joe" and if we thought anything was wrong, we figured it was because we didn't know how to handle a baby.

3 trains in one hand - that is a unique skill.

But Joe did not like cuddling much.  He never imitated noises and if you would try to imitate his noises, he would get quiet and listen to you but not make his own.  He ALWAYS had at least two things in his hands at all times.

He would make himself go rigid when he was angry and he went to sleep best by being left alone.  Of course, unlike many children with infant onset autism, Joe also slept like a rock.  He slept through the night at 2.5 months and before 4 months he was sleeping 12 hours straight every night.

We were in a playgroup and I noticed that all the other kids were starting to talk at around 10 - 18 months, but not Joe.  Nor was he pointing.  I started pouring through What to Expect the First Year and couldn't find anything about late talking children except autism.  The description in those days was quite narrow and of course, Joe didn't sit in the corner and rock, he didn't toe walk and he wasn't excessively flappy.  As a matter of fact, my incredibly non-autistic niece did much more toe walking and flapping than Joe!

At 18 months, DH and I were assured by everyone and their pediatrician that Joe would be talking by age 2 and to just "Give it time. Boys take longer."

Needless to say at 2 Joe still wasn't talking.  As a matter of fact, he had about 15 words when he was evaluated by a speech therapist shortly after turning 2 and 5 of them were letters of the alphabet.  He had briefly said "see" and sort of waved in a direction (although still not pointing) but "see" degenerated into "gee" which degenerated into "guy".  Needless to say the SLP that First Steps provided was not impressed and she was the first one that said "PDD-NOS" to us (of course with all the necessary disclaimers "I'm not a doctor", "You really need to get him evaluated", etc.) 

We loathed that first speech therapist for more reasons than just the fact that she was the first one to say "autism" to us.  She had a very hesitant way of speaking, constantly apologizing and never finishing her sentences, and DH and I just looked at her and at each other and thought, "This woman is going to teach our son to talk?"

After her we did get a wonderful speech therapist that we loved and Joe loved, but he still didn't talk.  He actually deteriorated further to where he only had 10 real words, so we finally bit the bullet and took him to a neurologist.  

As with the speech therapist we managed to get the worst neurologist in town.  He had hideous eye contact and stupid boring toys and then said that Joe had poor eye contact and wasn't interested in toys.  Well duh!

Of course the sad thing was that he was correct in his diagnosis.  We were still in massive a bit of denial but we did enroll Joe in a special needs preschool and sign up for a parenting course for parents of autistics.  Meanwhile I read everything I could get my hands on. 

Sometime that fall I read Let Me Hear Your Voice by Catherine Maurice.  The book was incredibly inspirational and really motivated me to get going on ABA.  At that time ABA was not being funded at all through the schools so we were looking at privately paying.  Needless to say, that can get pretty expensive pretty quick so we decided to do something we jokingly referred to as "high chair therapy".  We could still cram Joe into a high chair and it was an easy way to restrain him.  We got a handful of favorite snacks and tried to get him to imitate us or say certain things in exchange for a snack.  

He resisted at first -- big surprise!  In one of the early sessions, DH was working with him and Joe grabbed DH by the cheeks and pulled him in close as though to get his attention.  Then he smacked DH upside the head as hard as his little two year old arm could hit.  As DH said, "He might not have been talking, but he got his point across perfectly!"

Clutching foam letters & numbers at Discovery Zone.

We kept putting him in the high chair multiple times a day for several weeks and eventually this did turn out to be our breakthrough.  He went from 10 words to about 100 in the span of a week.  His pronunciation was still atrocious, but we were over the moon.

About six months after this, we started our home ABA program.  We were privately paying for it so we only did it for about 10 hours a week.  But this was the jackpot.  Joe could have been the poster child for ABA.  

His preschool teacher (whom we didn't tell about the program) stopped me one day as I was dropping him off and talked my ear off about all the amazing progress Joe had made during summer school that summer.  Um, yeah, that isn't to your credit that is due to the fabulous paras we have!  We did tell her at that point though that we had been doing ABA and she helped us to get partially reimbursed by the school district.

ABA was Joe's primary method of learning for a year or more.  One para taught him most of his prepositions in one afternoon by having him get "on" the table, "under" the table, etc.  It was fun for him and yet incredibly educational.  Another taught him his colors in exchange for her French fries.

And of course, DH and I learned so many "foolproof" ways to deal with autistic children that we couldn't fail when we had a second child with the exact same diagnosis, now could we?!?!?!

Awareness vs. Acceptance

As Autism Awareness day approaches, I have seen many arguments that we should call it "Autism Acceptance Day" instead.  In fact, many people in the autism community question whether we should be searching for a cure at all or just seeking acceptance.  Many of the people that feel this way are adult autistics who are happy with their lives.  As with so many other controversial discussions everyone feels like it should be all or nothing.  Personally I say both.

For those that think we should just accept them, quirks and all, I say that is wonderful.  If you are truly happy with how your life is, then by all means keep leading it.

But let's consider the other side for a moment.

Do you think that the 10 year old who is not potty trained because of all her sensory issues is happy with that?  Should she just be accepted as she is?

Do you think that 16 year old who cannot talk is thrilled that his only form of communication is his iPad?  Should we just accept that as his only means of communication and stop trying to teach him to talk?

Do you think that 20 year old who still requires his mom to shave him daily is getting everything he wants out of life?

Is that kindergartener who lashes out regularly at anyone and everyone ever going to be accepted by neurotypical kids?  Should he be?  If a neurotypical child was taking a swing at your son or daughter would that be accepted?

Maybe some of these adult autistics are thrilled with their life as it is now, but if they had a child would they wish these hardships on him or her?  I think not.

These are my primary reasons for wanting a cure.  If Alan would learn to communicate his wants and needs with an iPad I would be extremely happy.  But if there was a way to eliminate his autism, I would be ecstatic!!!  Unlike a lot of people, I don't think he is the wonderful, funny (not so little) guy that he is because of his autism, I think he is the wonderful person he is in spite of his autism.

If he truly thinks in pictures like the great Temple Grandin then I would be terribly sorry for him to have to give that up, but if he were able to speak, not have so many required rituals and could understand other people's emotions at least as well as many of my engineer friends, well I think that would be a fair trade off.

Is my reasoning selfish?  Perhaps.  But aren't most parents selfish when it comes to their children?  Don't most people want their children to have more than they had?  Don't most parents want their children to be intelligent, attractive and have wonderful personalities?  Does it mean I don't love Alan that I want more for him?  I don't think so.

Even Joe who has so much going for him, struggles with some things that I would love to be able to eliminate.  As an avid reader, it pains me that Joe cannot just sit down and lose himself in a book.  If he could actually make and keep real friends how could that not enhance his life?  I truly do not believe that if a cure were found for whatever is incorrectly wired in his brain that he would lose the essence of what makes him Joe.  I believe he would be more -- not just different and certainly not less than he already is.

So while I accept the adult autistics who just want to be accepted I still want a cure for my boys because I think so much more is possible!

Spotlighting Joe's creativity

Whenever Joe approaches a major life change (new school year, holidays, even vacation) he gets a little "edgier".  Needless to say with high school graduation approaching he has been a getting on my nerves a bit!  So in an effort to boost his morale and mine, I am going to spend this blog highlighting his creativity -- which is extensive.

I talked in Dorothy, I'm afraid we aren't in Kansas about Joe's amazing marionette he constructed out of pipe cleaners. Kerri commented about how creative it was and I figured I should give credit where it is due.  His marionette, which he calls Marionetto, took only a day or two to construct although he has tweaked it occasionally since.  He even trusted the cat to check it out but not Alan ... hmm, he might have something there.  The cat is probably more gentle than Alan!


He has also carved his own pumpkin for the last two years and while 2011's was probably better than 2012's they were both pretty impressive for a kid with fine motor issues!

The drawing in the book

Working hard!

Joe's final drawing.  A little off on the face, but otherwise, pretty well done!

But one of my all time favorites was his copy of a drawing from the book The Invention of Hugo Cabret.  He loved the movie Hugo when it came out and since reading has always been hard for him, we got him the book for his birthday hoping it would spark his interest.  He actually did a little reading on his own, but as is usual for Joe, the pictures were what really captured him!

Again, this didn't take him very long.  He did this drawing in an evening.  When he wants to, he can be incredibly focused and a very hard worker.

Now if we can only figure out a career for him that involves copying pictures from books or building pipe cleaner puppets, life will be good!

Joe is Destined for "Hoarders"

I have to confess I do not watch TV especially reality TV but I do not live in a bubble so I am at least aware of the show Hoarders.  Of course, I also know what a hoarder is since I live with one.

For background, I keep some things but I also pitch, donate or sell a LOT!  I really do not see a need to save baby toys or every craft the kids ever made.  I also try to get rid of books I know I will never read again or DVDs we will never watch again.  I will confess that pictures are a huge weakness of mine but I have even been known to throw away pictures.

So keeping this in mind, why am I so convinced that Joe is destined for Hoarders?

When Joe was in elementary school he was very into what he called "crafts".  Of course sometimes his craft was nothing more than writing a word or a phrase on a piece of scrap paper and cutting it out to show to people.  He would then pile the little scraps of paper on the dresser in his room.  About every two weeks I would go up there when he was in school and throw away two thirds of the crafts off the top of his dresser.  The first time I did this I thought he would get angry with me, but he didn't even notice.  He also labeled lots of things.  We used to buy tape by the case at Sams and DH would bring home scrap paper from work by the box.  He built some amazing things out of paper, string and tape!

This was also a time when he would tell stories over and over and over and over again making very slight changes.  For example, he might tell the story of the gingerbread man, but change it to a gingerbread snowman and then wonder why DH and I did not want to listen.  He would do this so often, DH and I got very adept at pretending to listen.  We both felt bad and yet it was so exhausting to have his chattering at us for hours on end saying nothing really new. 

During this time we were carpooling to private school and the other student we carpooled with was Tina, an adorable little gal with ADHD.  We used to say they were perfectly suited for each other because while Joe would tell the same story 15 times in a row, Tina would appear to be listening attentively because she couldn't remember the last 14 times because of her ADHD.  We later discovered that Abilify made Joe very OCD in this way and after we took him off that medication he improved remarkably.

One year shortly after Joe went off the Abilify, Alan started back to school before Joe after winter break so I told Joe we were going to clean up his room.  I figured now that he no longer needed to make and keep the goofy little crafts he would be a bit more willing to clean up his space.  And while he was willing, the experience was quite an eye opener!!

I found:

• hair toys that were not mine (he had picked them up from parking lots and playgrounds) 
• used sucker sticks (eww!)
• about a half dozen flashlights, rulers, old batteries, and tape measures
• the wrappers from bandaids
• toys that Alan played with but Joe decided to keep in his room so that Alan could NOT access
• a set of little toys like you buy for party favors that we had never purchased for him (shoplifted?)
• one of DH's old pay stubs
• a key to our safe deposit box

Yikes!  It has now been four years since the massive room clean up and while all the  boxes are still there with their cute little labels and contents intact, he is still a hoarder.  He saves every card, letter and ticket he can.  Here is what his room looks like now.

So while this picture doesn't look too bad, I do have to share the story that brought about this particular blog entry.

Joe loves running errands for us.  He is so sweet that way.  He will tell me "that's what I'm here for!"  So one day last week I sent him to the supermarket with some cash and the request that he buy milk and animal crackers.  He comes home and asks if I want the receipt.  It was cash so I tell him "no" and then he says he is going to go put it upstairs in his card box.  Huh?  I can see wanting to save ticket stubs and cards, but why in the world would he EVER want to look at a cash receipt from the time he went to the store for mom and got milk and animal crackers?!?!

Hoarders here we come!

Intro

I am honestly not sure who will read this, but I am using this blog also as therapy.  

For those who do not know me, I have two sons with different forms of autism.  

Joe is almost 18 and fairly high functioning.  He just got his driver's license and talks incessantly, but there are curious lapses in his comprehension and he is literal to the nth degree!  He is a senior in high school and he is mainstreamed for a couple of classes and in a special ed class for the remainder.  He is the darling of the special ed programs because he is so high functioning, but he is just a little shy of being able to even make real friends.  He sees almost no need for calling, texting, e-mailing or even getting together with people outside of school.

Alan is 14 and a much bigger challenge.  He is sweet and affectionate at times, violent at others and completely self absorbed at others.  He loves to climb.  He has a smattering of words (mostly nouns), some echolalia and a lot of vocalizations!!

My husband and I are both engineers by degree but I have been a stay-at-home mom since Joe was born.  At times I have really wanted to go back to work, but someone has to be available after school and since my husband's job is much more demanding, that someone has been me.

I have several hobbies and they have been my sanity saver of late.  I also like to read, but have done very little of that lately.  I will however mention it when I read a great book or see a good movie.

The reason for the title of the blog is that at a recent family gathering we were discussing trees and I mentioned that we had a Bradford Pear tree that didn't bloom for about 10 years.  At one point and time, my hubby and I used to like to joke that we had the special needs kids, the special needs cat and the special needs tree.

(Note:  The original title of the blog was "Specializing in Special Needs" but I changed it to "Life with the Spectrum")