Finally Breaking the Silence

I've had the official answer since the end of June even though I knew before then what I've known for quite some time.  It's still really hard to talk about it because most people don't understand it.  And I'm not comfortable talking to people and saying, "Emi is deaf and Eriks has Asperger Syndrome."  Although this is a fact, I don't like labeling them or want it to define who they are.  However, I feel more and more like I have to explain the above to people all the time.

I'm sure my regular readers remember posts where I've talked about Eriks' behavior issues and trying to diagnose him.  Originally Dr L diagnosed him with mild AD/HD and then starting seeing behavior that made her change her mind.  So she got a bit more aggressive on testing him and even giving us a fairly intense questionnaire to answer.  When a bunch of our responses starting pointing in one direction she chose to give Eriks an IQ test.  But a different type of IQ test that wouldn't only gauge his intelligence level but also give answers to his behavior patterns.

To make a long story short, his diagnosis was handed down at the end of June.  Eriks has an autism spectrum disorder called Asperger Syndrome.  If you take the time to go to the link, especially if you know him, you will see that many of the behaviors typical of AS, Eriks exhibits.  The ones I see most are: lack of social and emotional empathy, impaired nonverbal behaviors such as eye contact (you can't get him to look at you when you are talking to him if you paid him), engaging in a long-winded and one-sided conversation (he can go on and on about things like you've got nothing better to do than listen to him), fixation on certain topics (he will ask you 10,000 questions about a Star Wars character you know nothing about until he gets the answer he wants to hear), repetitive motor behaviors (he has a pattern of tapping on his fingers over and over again with his thumbs that either starts with the thumbs hitting his pinkies and going to his index finger or vice versa.  It almost mimics a nervous twitch), sensory issues (needing to touch things constantly), light and sound sensitivity and sleep problems are the big ones.  He also has a very exaggerated laugh for things he thinks are absolutely hilarious but the majority of us would think are dull or dumb.

I'm glad that we finally have an answer but I am an OCD person, just ask Lane, and Eriks' AS conflicts with my OCD.  I've always lacked patience because of my OCD and when I am doing something, I don't deal with interruption/disruption well.  Eriks doesn't understand because of his lack of social & emotional skills that there are things that are more important than the story he is telling me.  Another common trait among AS is easy frustration and anger, especially when what the person with AS is trying to articulate is not being understood or there is something that takes priority over their story.  Eriks also gets frustrated when things don't come easily for him, especially school work.  He is very smart.  Based on his IQ test results, he has an IQ of 112, but Dr L also said that because of his lack of long term focus (also common among AS), she honestly thinks that his IQ is probably 118 or 120.  Eriks knows he is smart so he assumes everything needs to come easy.  If it doesn't he gets mad and calls himself dumb.  As a parent this is so hard for me to see because I know it is so untrue.  But you just can't make him understand that.  I easily get frustrated with Eriks because I expect him to understand rules and directions and there are times he just doesn't.

The hardest part is he is socially isolated, especially at school.  Not because he chooses it, but because kids just don't get him.  It breaks my heart when he gets in the car some days and says, "No one wanted to play with me today at recess."  I know sometimes it's because of his AS he expects kids to do what he's interested in and when they want him to join what they're doing and he's not interested then he gets left out and sees it as being rejected by his peers.  There are kids at school that I know really do like him, but probably as I said, just don't get him so in his little mind thinks that they don't like him.

I'm going to wrap this up soon but Dr L was telling us some of the questions on the IQ test she gave Eriks that is given to kids who likely have AS or autism spectrum disorders (ASD) and this one still makes me laugh.  She told us going into her testing of Eriks that you can't give kids you suspect are AS or ASD a typical IQ test the rest of us would take because their brains don't process the info the same way.  One of the questions showed a man sitting on a tree limb with a saw facing the tree getting ready to cut down the limb.  Kids without AS would answer the question by saying that if he cuts the limb off the tree the way he is sitting, he will fall with the limb.  Eriks answer was, and I can't quote it verbatim, was along the lines of, "He shouldn't cut the tree because the tree will die.  Trees make oxygen and people need oxygen to breath and stay alive.  So cutting the tree is very bad for the environment and for people."  Dr L said that was a VERY typical AS answer.  It wasn't so much that the guy would end up falling and hurting himself but what was more important was how he was damaging the tree.

One of the best treatments for AS is OT (occupational therapy).  It helps kids with AS become more sensitive to others.  I'm not 100% sure what other benefits it has because we're still trying to get the final report from Dr L's office and recommendations for specific types of OT.

Living with Eriks puts a lot of stress on me since he demands so much attention due to his AS.  He physically drains me daily.  I know a lot of who Eriks is isn't because he had a choice in it, but at times all the time, I don't understand why he's refuses to accept my answers or argues with me.  He has it in his mindset that he can make his own rules.  He doesn't think before he does things, also a common AS symptom and disruptive to my OCD ways.  He'll get on his bike and head to a neighbor kids house before he would ask permission or even say, "I'm getting on my bike and going to so-and-so's house."  This goes back to the social insensitivity to others. This has happened several times when he's gone out to play in the backyard and I peek out the window to check on him and he's not there.  I go out and call for him but there's no answer and see the open gate and know he's wandering the neighborhood.  I have gone into a panic not knowing where he is because it's difficult for me to drag Emi all over the neighborhood looking for him.  It's scary and I don't wish this for anyone.

OK, I could probably write pages and pages about this so I need to save some for later as the OCD me tries to deal with understanding and learning to deal with Eriks and AS.  Besides what I've read about AS, I have no clue as to how to be a parent to a child with AS.  Someone recommended a book to me written by another mother of a child with AS.  I need to get my hands on it.

It's going to be a long journey for us as we learn how to deal with Eriks' behaviors and I hope that those who know him will begin to understand him better now that the news is out in the open.

Coming or Going???

Yeah, I haven't figured it out either.  I have been a bad blogger because my life is utter chaos right now and I'm hoping to have it back under control in a few weeks.

It all started when Eriks went back to school about a month ago.  After we got him in school we were in a feverous pitch to get Emi where she needed to be.  That did not come easy.  Although I spent a few years of my K-12 schooling in public schools, I can clearly see why my parents chose private schools when they could and why Lane and I from the start decided we wanted our kids in private schools.  I'm going to condense this as best as I can.  We found out when Indiana.School for the Deaf started classes and went directly to them to get Emi registered for their Pre-K program because we found out that there is no program like what she had in GA in any of the county schools.  We were told by I.S.D. that we had to have permission from our school system to send her there.  Seriously???  I was beyond ticked off.  So we set up a conference with Westfield.Washington Schools to discuss what would best meet Emi's needs even though I knew exactly what she needed.  We spent nearly 90 minutes going back and forth.  The school system was convinced they could accommodate Emi even though they couldn't guarantee the intense speech therapy she needed nor was there anyone who could sign to her.  If it weren't for her BCA (bone-conductive aid) she would be completely deaf.  There are times where she will be unable to wear it - bathing, swimming, etc and she will need ASL for communication.  Lane and I couldn't get that across to the school system.  They were so in the mindset that if she has a hearing aid now, she's fine and needs to be in a regular classroom.  We held firm and said that what they had to offer Emi was not good enough.  They finally let us have our way.  It was frustrating and infuriating.  I am not happy with our school system at all and thankful Eriks is in a private school.  I pray that Emi never has to go to a public school in our school system so long as we live in this house.  Anyhow, Emi finally started school on Monday and loves it!  It's amazing that just a few days of signing and speech again gives her the motivation to start signing and talking again.  Not to say she wasn't doing it at all.  But she loves school and has wanted to go back all summer.  I know she misses Jenna, Karen and Lauren so much, but is enjoying her new teacher.

I have gone through medical h-e-l-l trying to set up specialists for myself.  As much as I liked the cardiologist and nurse practitioner at Emory, I hated Emory itself.  I wouldn't recommend anyone seek medical services there at all.  I'm sure there are many wonderful Dr's there, but the support staff and administration stinks!  I needed more test strips for a machine I use to check my blood.  Similar to a glucose meter but it's to check the thickness of my blood.  My CHD followers will understand INR levels.  The clinic there would not approve more test strips since I no longer lived in the area even though until I see the new cardiologist, I'm still a patient there.  I could choose to travel there, but I'm not going to.  I called my new cardio's office and explained the situation and we're working on getting it taken care of.  So very, very thankful.  It has definitely been stress I don't need.  I was in tears over this last week.  If I don't check it every 4 weeks I could be putting myself at risk for a stroke or a bleed.

Lane's crazy busy with school leaving me dealing with pretty much everything.  This is so not what I signed up for but the 1st year of law school is the hardest.  We had the water heater replaced today.  It's the 3rd one this 13 yr old house has had.  Why the previous owners didn't have an expandable water heater before, we have no idea.  Thankfully most of it was covered under the home warranty we insisted upon when we bought the house.  Our fridge broke last week.  Yeah, after 2 months the fridge went out.  Repair guy came out Monday and yesterday to replace one of the 3 motherboards that control it and it's not a motherboard issue.  It's an internal issue that probably occurred during manufacturing.  So now I'm waiting on Sam$ung to approve replacement even though the fridge is under warranty.  Meanwhile I'm going to the store almost daily because it's not in fridge/freezer in the garage.  Thank gawd for the backup or I would've lost a lot of groceries.  I have always loved my Sam$ung electronics and appliances but this really bites.  It's a brand new model they recently rolled out too!

When it rains, it pours!!!

I know there's more stuff that I should talk about but I'm out of time.  Too much to do and kids need to be picked up from school in just over an hour.

Hopefully I'll be back soon with some photos, etc.

No Fear

My daughter may be deaf.  At 3 1/2 she may hardly be able to speak because of the combination of deafness and the repair of her cleft lip/palate but nothing, I mean nothing keeps this kid away from water.  Since moving back to Indiana we have spent our fair share of time in my parent's pool.  Last year was Emi's first real swimming experience in a pool.  The year we brought her home, we didn't get in a pool at all.  She was a little apprehensive last summer.  She pretty much just hung out on the steps and absolutely disliked the baby float.  She was somewhat OK in our arms but we needed to stay where it was shallow.  Towards the end of last summer she got more brave and we were hopeful.  This summer she is crazy in the pool.

As a matter of fact, just yesterday she was wearing her water wings and decided to take them off and jump straight in.  Mind you she can't touch the bottom.  She's still too short.  Eriks was in the pool so he helped her but she is well on her way to learning to swim.  After jumping in, she did shoot herself back to the surface and was trying to kick to stay afloat.  The problem is she doesn't want to use her hands to help her swim forward. With the water wings she is jumping into the 8 ft deep end of the pool and loving every minute of it.  Jumping into the water is her thing.

So here's praying she'll be swimming by next summer without water wings.  Enjoy the photos from Emi's water fun this summer.

A Week in Paradise

It's been more than a month since our trip so I figure it's about time to blog about it.  I've been busy this week with sending Lane off to law school and Eriks off to his new school.  Both of them seem pretty happy with their new surroundings.  Although Lane is concerned about balancing family, school and studying but I think in a few weeks he'll have a groove going and it'll be fine.  Eriks really likes his new school.  Although it's a haul from our house (luckily it's close to where Lane goes to school so he can take him in the morning), he is in a very small class.  Only 9 second graders total.  I think the whole school only has about 70 students.  So I'm happy that he's happy.  We'll see how things are in a few weeks when he's got a bit more school work to do.

So mid-July, Lane and I took an early 15 yr wedding anniversary trip to Riviera Maya, Mexico.  We stayed at a very nice all-inclusive adults-only resort.  It was pure relaxation.  Most mornings we woke up between 9 and 10.  And most mornings we skipped breakfast and went straight down to the pool.  I often started the day with the non-alcoholic beverage of the day.  Of course it wasn't long after that I'd move on to a pina colada or some other fruity beverage with alcohol.  At some point we'd wander to one of the restaurants at the resort and have lunch.  Then it was back to the pool.  Lane and I would hang out at the pool until about 5ish and then head back to the room to get ready for dinner.  It was humid enough while we were there that the majority of the time I actually wore my hair curly.  So in the photos I will post you will actually see my curly hair.

Some of the restaurants at the resort were really good.  Others I wasn't too impressed by but the food was edible.  Our favorite was the Japanese restaurant.  We ate dinner their twice.  Usually we'd have to wait for a table so they give out pagers that work to my knowledge all over the resort but we'd sit at the martini bar and sip cocktails until our table was ready.  I found a love of lemon drop martinis and both Lane and I found that we like gin martinis as well.  Every night the resort had entertainment of some sort as well.  A show, a band, etc.


Some of the interesting parts of the trip were seeing an interesting naked guy standing on his balcony at the resort next door while we were eating lunch one day.  Another highlight was that the resort gift shop actually sold Via.gra.  I guess in Mexico you don't need a prescription for it.  And a waiter that looked like he could've been Obama's twin brother.  Lane and I actually joked that being a waiter was Obama's real job.  He was just moonlighting as the president.

We loved every bit of our vacation.  We relaxed, we got to catch up on some sleep.  I can't wait to do it again.  Enjoy the photos!

 Super big lizard on the sidewalk across from our balcony.  His tail must have been close to 18 inches long.

 Pool view from our balcony.  There were tons of pools to choose from.

 On the left is a gin martini and on the right is my lemon drop martini.

 See, I have curly hair.

 Drinks poolside.  We kept them coming all day!  Loved it!

 Cool fountain they had on the grounds.

 President O.bama doing his real job.  

 Tequila shots the last day before we took the shuttle to the airport.  It was very yummy!  Should've had another one!

And finally, the Via.gra in the gift shop.  

15 Years Ago Today...

Lane and I exchanged vows in a chapel in Las Vegas.  The elopement wasn't completely planned.  It happened when I found out my insurance company would not pay for the heart surgery I needed.  We were engaged to be married and planned on getting married in May of 1997.  My health wasn't exactly where we wanted it to be and knew that surgery was necessary.  So sometime in July, Lane and I decided my health was more important and his insurance plan would cover me.  So we semi-quietly got married.  Our immediate family knew and a few close friends but not anyone else.  We had the wedding we still wanted to have in May as planned.

It's still hard to believe that after only knowing Lane for 8 1/2 months, I married him.  We met at a wedding in December of 1995 and started dating in February.  He proposed in June and we got married in August.  Lane and I dated long-distance our entire relationship.  I'm one of those few people that can say, "He proposed on our 3rd date."  Lane is one of the best things that has happened to me and has a person with a serious CHD, he has been the rock I've needed through all the ups and downs of this disease.  My parents were good supporters when I was younger, but as I got older, I think they felt as though they still had to protect me like they did when I was a child.  Parents of CHD patients are always so fearful when it comes to their special kids.  With Lane, at the age of 27, I rode my first roller coaster.  My parents would've never allowed me to.  Even after I told my mom what I did and how much I loved it I got a lecture.  Lane has let me decide what I want to do unless of course he thinks it's a serious danger.  Unfortunately my roller coaster days ended 5 yrs ago when I had my ICD placed.  I'm still bitter about that.

Fifteen years passes in the blink of an eye.  There is no better person for me to spend those 15 yrs with than Lane.  I am truly a blessed woman to have such a wonderful man willing to take care of me when I'm at my worst.  Someone who time and time again has held my hand as I'm a tangle of wires and IV's and have a breathing tube down my throat.  He has put up with my OCD ways and my craziness.  He even loves me when I'm angry with him.  And I love him for all that he is, all that he has, and all that he has sacrificed for me.  Love you Lane!  Happy Anniversary!

Pool Playdate (from June)

Back in June, just about a week before life was turned upside down by Lane's retirement and our move, we had to have one more friendly playdate with Miss Bri.  Oh, how we miss her and her mom!  We headed over to their awesome pool and spend a very hot afternoon trying to keep cool.  Eriks was off on his own jumping over and over into the deep end.  Bri and Emi stayed in the shallower end while Lisa and I had some adult conversation.

It was such a great way to close our time in Georgia with friends like them.  I know Eriks misses Miss Bri because she was his first friend there.  Hopefully we'll be able to convince them to come for a visit some time so I can show them some Hoosier hospitality.

Lane's Retirement

So much for being on top of things.  We've been in our house a month and we are still trying to get the last few boxes unpacked and things situated right where we want them.  Parts of the house are still being painted so it makes it a little difficult too.  School starts for Eriks everyone but me in a few weeks.  It would be nice to have everything done by then.

Lane had a very nice retirement ceremony even though it was lightly attended because it ended up falling on the Friday that Lock*heed employees have off and the crew of guys he worked with were out of town doing mandatory training.  Still it wasn't a horrible turn out but had the other stuff not been going on there would've been a heck of a lot more people.

The night before his retirement ceremony I cried - a lot.  Lane was trying on his uniform to make sure everything was in place where it should be and it hit me that the day of his retirement would be the last time I would see him wear it.  Everyone who knows me well (and I'm sure I've said it before), knows I have a love/hate relationship with the military.  But when you've been with someone for 3/4 of his career and put up with all the ups and downs, the day they retire is bittersweet.  I was thankful that he was no longer having to take orders and that he could do as he pleased.  I didn't have to worry that the military would tell us, "Hey by the way, we're moving you to Timbuktu tomorrow."  But I was sad about all that too.  You grow accustomed to it.  It becomes second nature to know that you have no control over your life and where you live.

Lane's entire family came to town for his retirement.  It meant so much that his parents and siblings were there.  My mom & dad made the journey from Indiana to be with us.  I was sad that my siblings couldn't make it but my sister had to travel for work and my brother also was working.  They were there in spirit.

The day of the ceremony we had cake & refreshments.  The following evening we had a dinner for our family, close friends and several of the people Lane worked with closely.  We all had a really good time.  Part of me didn't want the weekend to end.  Lane still isn't officially retired.  That doesn't happen until Sept 1st but he had about 60 days worth of vacation/permissive leave from the military that he took in order for us to have time to get settled in Indiana.  It's kind of nice that he's been on paid vacation for just over a month and has 3 1/2 weeks to go.

I don't have the official photos of his retirement.  Just a few that I took with my camera.

Catching Up

Moving took me out of the loop for awhile and I'm still not completely unpacked in the new house.  There's still a fair amount to be done and the fact that it feels like 110 degrees outside doesn't help anything.  It's too hot for Eriks and Emi to be outside and they're driving Lane and I crazy because for some reason they just aren't content enough to play in the playroom with all their toys.  That's part of the reason there's more stuff to be done around here than I'd like.  Every 5 minutes I'm being interrupted and distracted.

Anyhow.  The move went fairly smoothly.  Part of my frustration though is in all the times the military has moved us the boxes have been labeled properly.  This time not so much.  Some boxes are labeled properly, others we open to find not what the box says it contains.  We still can't find our silverware, coffee grinder, bakeware and other stuff that we need.  I pray that we find it all soon.  Everyone is adjusting pretty well.  Eriks has found that our neighborhood has lots of boys about his age and with only about 40 homes in the neighborhood, I know he can't be too far away.  He is in heaven having all these kids his age to play with.

Before we left Georgia, Lane had a final physical at a military base a few hours away.  Lucky for us we had friends who were stationed there.  So we made some time to see them too.  My friend Jen, suggested we go to Lane Orchards.  Hands down the best peaches I've ever eaten in my life.  They were to die for good!  We definitely bought some.  We also bought peach wine.  It was a fun little trip with Jen to see the process of how they clean and get the peaches ready for packing.  Plus we did get to see them packing peaches to be delivered out.  The kids also loved the peach ice cream.  It was seriously refreshing on such a hot day.

Look for more posts to come soon as I will be working hard to catch up on everything that's happened in the past 4-6 weeks.  In the meantime, I'm going to see if I can go find my silverware!

Lego Creations

About 10 days ago when I needed some time to get a few things done, I asked begged my children to go build some really cool stuff with Eriks' lego*s.  I think it's a written rule in kids' handbooks to bother their parents when they are on the phone.  I had been trying to make phone calls for awhile that day and I absolutely needed to get things taken care of.  I also promised Eriks that I would take photos of the things he and Emi made and post them on my blog. So I'm living up to my promise and posting.  Eriks is really great a building things.  The creations he built were pretty cool but he's created some even cooler things.  But my mission was accomplished by getting them to do this and most of my phone calls were made.

Changes Are a Coming

Since I am blogging on Father's Day I want to say Happy Father's Day to the love of my life and the father of my children, my husband, Lane.  He has done a great job with our kids and there are many days that all the extra stuff he does goes unappreciated.  As a woman with a CHD, there are days where I am not feeling as well as I should and he does a great job doing his job as dad and even my job as mom.  He has become pretty good at laundry since our laundry is downstairs and I physically cannot haul it up and down the stairs.  Can't wait to move into the new house where the laundry room is upstairs with the bedrooms!

I also want to say Happy Father's Day to my own dad who has overcome lots of challenges in his life, most especially beating cancer 3 yrs ago and getting through a hip replacement just last month.  You have shown that with perseverance, all obstacles can be conquered.

Now onto the rest...

I still can't believe that in less than a week, Lane's military career will be complete.  I've been a part of it for 15 1/2 of the 20 1/2 yrs of military service and it still seems like yesterday that I threw myself into this roller coaster life.  I've been looking forward to the day that it's over but just this past week I was ready to put the breaks on it.  I'm still not quite sure I'm ready for it.  Lane sent me a text message on Thursday letting me know that his career as a military pilot was complete.  They had finished flying the current airplane and there weren't going to be any planes to fly until after his retirement.  As soon as I read the text, I started to cry.  I'm still sad about it.  I didn't think this transition was going to be easy but I never thought it was going to be this hard either.  I feel like I have 2 personalities right now.  The Liene that is jumping up and down for joy that my kids will have the opportunity to stay in one place for more than 3 yrs and that I have a say in my life again and will be near family.  Then there's the Liene that's screaming no at the top of her lungs not sure she wants to give up this nomad lifestyle.  Moving has giving me the opportunity to live in some pretty cool places and some not so cool places and meet some great friends.

The packers come a week from tomorrow to pack up all our belongings and then load them on to the truck to haul up to our new house in Indy.  There's so much to do before then.  We're still weeding through our stuff and reorganizing.  We have to figure out where we're going to pack up the stuff we don't want the movers moving because we are going to do it ourselves.  There's not much but enough to probably fill up the back of my minivan.  I'm thankful my mom is taking the kids back to Indy on Monday so Lane and I can deal with the movers without having kids in the way.  

And I'm finally going to show a photo of our new house.  It's been sitting empty for the past 3 weeks and I didn't want to show it since we weren't living in it yet.  But now, my family is over at the house every day painting and doing stuff I've hired my brother & father's company to do.  The kids love the house and the yard.

The picture was taken in early spring before the leaves started to bloom.  I actually pulled it off the MLS listing when we found the house and wanted to look at it.  We've got some landscaping to do.  There are a number of bushes that we'd like to take out and the lawn likely needs to be treated to keep it pretty.  And I'm hoping I can still plant flowers when I get there to add some color to the landscaping.  Slowly but surely we'll get the house to completely suit our taste.  But it's in a small, quiet neighborhood and the best part is that unlike the neighborhood I'm living in now, the houses have space between them and are not stacked one on top of the other and we have no neighbors behind us.