All Together Now!

Thanksgiving at my house was awesome. My home, and heart, were so full I thought both would burst at the seams!  Family and friends entertained us with their presence AND my little Carson was (and still is) home!

People Everywhere!!!

I really love my family!
 

  Carson's time in the hospital appears to have been a wise decision.  He is on some medication for his anxiety and has learned some coping skills.  I have also learned that I need to be more scheduled since he responds very well to having time prompts.  I'm grateful to all the doctors who helped him and gave me back my sweet little guy.

Carson chatted with this aide for hours.  He told her that the good thing about October was that it was Breast Cancer Awareness month.  I think it is so cute that a ten year old would be concerned with women's health.We were waiting for a bed at the psychiatric hospital and he was loving all the attention at the Children's Hospital.  Little did he know that it would all change when he changed hospitals...

Carson's first meal at the psychiatric hospital.  He was not too happy that they brought him pizza on a plate that was smothered in peas.  We had to get a second plate and separate the two.  Still, dealing with the pea flavor on the pizza was not something he really wanted to do.

Getting a hug from his bestie, Mason, during visiting time.

Carson in his room.  He was not thrilled when he found out that there was not a TV there.

During his stay, Carson went to group therapy, music therapy, art therapy, and met with social workers, psychologists, and psychiatrists.  We came home with a clear plan and a support system.  Carson will start a Day Treatment program on Monday.  I think we may be able to get our insurance to pay for five days.  That should be long enough to really reinforce his new skills, and teach him some additional ones for coping with his anxiety.

The kids were so excited to see Carson when he got home that they made a little shrine for him in the entryway.  Carson loves turtles and the shrine was everything turtle (oh, and chocolate!)

Carson's Boy Scout troop made him a "Welcome Home" sign.

Carson's favorite plushies were there to greet him.

Turtles EVERYWHERE!!  Carson loved it!

A Minecraft turtle shaped room was skillfully constructed by Amanda

The kids greeted him with all of his favorite goodies.  The plate was piled high!

 

 As parents, we make the best decisions we can with the information we have. Hopefully, the fallout from our actions is positive.  Parenting is the hardest job I've ever had to undertake but the rewards are incredible!  I'm really praying that the Carson who came back to us, stays with us. 

Missing My Buddy

It's awfully quiet around the house without Carson.  I am really missing him.  This is different than when he spent 16 weeks in the NICU, I hadn't bonded with him the same way as I have now.  He has his part in our family, a role to play, a hole in my heart to fill.  He is not sleeping well on a strange bed and I am not sleeping well without him kicking me all night (yes he still co-sleeps.)  I desperately want him home, and he cries to come home every time I visit.  It rips my heart out to have to leave a child that is begging, and negotiating to come home.  "Please Mom, I just want to go home.  I'll try so hard to be good, really I promise."

The thing he doesn't understand is that he isn't there as a punishment, he is there to keep the rest of the family safe.  His behavior had escalated to the point that the violence was going to really hurt somebody.  Trying to live with himself after doing irreparable damage to a sibling, friend, or animal would have had lifelong negative consequences.  I'm praying that his time in the hospital will have lifelong positive consequences.

Deep breaths.

I Left My Heart

Carson

Secrets have power.  I realized that when I was about twenty-seven.  Admitting that my childhood had been peppered with abuses was a direction I did not want to take.  Being honest about life scared me. Clinical depression and anxiety had become the norm until I followed the example of my awesome sister and got myself into therapy. As a result, Jeanna and I have become more open and honest about everything. Some things aren't fun to admit, but they are the truth.

My sweet buddy Carson has been struggling for some time.  I had my doubts about writing all of this down, but hiding his health issue would be the same as saying that I was embarrassed of it, and I am not.  I never want him to be embarrassed either and I never want him to feel the sting of loneliness that can come when one feels their diagnosis is somehow unique.

Carson is one of what I imagine to be tens, if not hundreds of thousands of children who suffers with extreme anxiety, and likely depression.  This isn't something that just popped up out of the blue.  We have been aware of the anxiety for many years.  I've known that at some point that he would need treatment beyond what I could give him and that it would mean putting him on medications to treat what I believe is a chemical imbalance.  That time has come.  After dealing with some very volatile, uncontrollable behavior, Jeff and I checked Carson into the hospital for treatment.

Waiting for admission to the mental health unit.

My thoughts are all over the place.  I miss my son.  At the time that I'm writing this, he has only been away overnight...but I miss him.  I spent the first night with him in the children's hospital waiting for a bed to open up in the appropriate location.  Once the hospital had a place for him, we were asked to leave him and limit our visitation so that he can be doing the work that needs to be done.  The drive home was a lonely one.

I vacillate between confidence that the right choice has been made, to thinking that it seems like overkill to hospitalize a little ten year old for psychological help.  I blame myself for neglecting to get him help until he was in crisis mode.  Leaving him there was leaving a piece of my heart.  Hopefully, he will be home soon, ready to be part of a family that functions as a unit. I look forward to his return and bringing with him the piece of my heart that is missing. 

I look forward to being whole again. 

More Kid-isms

It's time again to write down things that have come to the forefront of my memory...
My quadruplet mommy mind is so overloaded that when the kids past and present funny quotes come to mind, well, it's time to get them written down!

Mason (ten years old:) "Breastfeeding your baby doll. Creepy, or ground breaking?" Apparently he saw this on an ad, but some questions I'm just not prepared for!

Jaxon's response to learning what a fax does: "That is so cool! I think technology might be the future." Ummmm, you may be on to something there son!

The kid's cousin Melody. When I asked who had been playing in the food coloring, she replied "I didn't do it!!" I guess she thought I didn't have eyes. She was almost 4. 

 

To preface this next story, you have to know that Mason's very favorite food has always been McDonald's fries. Driving past the Golden Arches usually means we end up taking a trip through the drive through. When the kids were about 3 and learning their alphabet, I was writing the letters down on paper and asking the kids to identify each letter. The kids had a great time correctly identifying letters and shouting out what letters they recognized until we reached the letter m. Mason took one look and shouted out "FRIES!!"

I still chuckle when I see him happily eating a box of hot french fries with the m on the front.

 

Mason holding his favorite stuffed animal "Batman."

My final kid-ism for today...Mason used to have a stuffed bat he named Batman.  Batman traveled with him everywhere!  That bat was an absolute favorite toy.  As Batman aged and became ratty looking and torn, I found Mason performing CPR on him.  Not quite knowing what was going on, I hid just outside of his view but well within my view and earshot.  I heard him sadly proclaim to his brother  "Call 911.  I've done everything I can but I still wasn't able to save his life!" 

Fortunately, I was able to intervene before 911 was called.  I would have been really embarrassed had the paramedics showed up to save a stuffed bat!















"It's Just Weird!"

My three sons.  Carson, Mason, and Jaxon

 

Today I am so grateful for life's tender mercies. 
Yesterday was difficult.  It was a very windy day and the twins were getting ready for speech therapy.   The wind really bothers Carson.  It scares him, causes great anxiety, and it hurts his ears.  So to keep him calm, he will wear headphones with a hooded jacket over the top when he goes outside.  As the twins and I made our way to the car, Jaxon came zipping up on his scooter.
"It's just weird."
"What's weird, Jaxon?"
"It's weird that he has to wear those headphones...Why does he have to wear those headphones?  It's just weird!" he replied, this time with a little more anger in his voice.

In that instance, my heart felt like it had been ripped right in two.  Two typical kids who are understanding that their two Autistic brothers are different.  One brother who gets that his other brother may be viewed as strange.  Half.  Half of me that needs to be as cognisant of my typically-abled children as I am the needs of my differently-abled children.

I pulled Jax aside and gave him a big hug.  "Jaxon, I love you son." I replied. "I know that you see that as strange but there will be enough people in this world who will tease Carson.  I need to ask you not to be one of those people.  Carson needs to know that when he is home, he is safe to be exactly the person God created him to be, and that we will accept him and love him just the way he is.  The very same way we accept and love you for the wonderful person that you are.  Can you try and do that for him?"  Jaxon's face softened, his voice became kind, and with a sweet nod of his head he answered "Yes."

I broke into tears on the drive to speech therapy, tears that are often close to the surface right now.  I really hate seeing my kids suffer, even though I know that challenges are exactly what we need to forge us into the people we become.  I really hate that the twins may be viewed as "weird."  I am so proud of them for all their quirky behaviors, yet I understand that the world may not be as kind.  I love that Mason is a little human computer when it comes to all things NASCAR, and I love that Carson really gets into geography and the weather.  They are brilliant, sometimes too brilliant for us "normal" people to understand.  I want the world to see the boys that I see.

I ended up having a restless night.  Sleep eluded me.  After several unsuccessful attempts to count sheep, I picked up my laptop and clicked on to my favorite Autism website, Thriving With Autism.  I hadn't visited for quite a while.  One of the articles immediately caught my eye,  "I Was A Casualty,"  a brutally honest, gut wrenching look at being the sibling to a differently-abled child.  The woman who wrote the article has been a friend of mine for ten years.  In all that time, I did not know this part of her life.  The knowledge came at just the right time, a true tender mercy.  I know the article had to be painful for her to write and I am grateful to her for putting it out there for others to learn from.  I highly recommend the piece to anyone who is raising a child who is "different" and wonders how their typical children are feeling, and how to help them. 

Thank you Andrea Warner.

Mason and Carson (who was getting geared up for a windy day.)

Autumn Leaves

While on our daily walk, we noticed that the older neighbor on the corner could use a little help raking leaves off his VERY large yard.  So, we decided it would be a really great project for the kids (and all of us really,) to give just a little back to someone in the neighborhood.  So, I got a few things together, and went leaf crazy!!!

My energy to accomplish my task.

The very large yard absolutely covered in leaves.

Me, Amanda, Jaxon and Elder Kuli Yes,we were even fortunate enough to round up some young men to contribute!!

Elder Kuli from Tonga.  He worked very hard.  But sheesh, look at those biceps...He was good to have around.  We will feed him and his missionary companion dinner tomorrow for all their trouble.

Carson and his headphones, ready to man the leaf blower!

Mason and Carson

Amanda worked very hard....

And so did Emma

Elder Bennet manned the leaf blower.

Adam was on bag duty, and we filled a bunch of them!!!

Adam's mom, Lisa.

Here's the whole group that participated.  I think we filled more than  35 bags, I lost count.  My body is sore and tired and my face a little sunburned,  It was truly one of the best days I have spent with my kids.  They are worn out, I can hear their heavy "sleep breathing" as I write.

It was so exciting to hear the girls and Adam talking about how much fun they were having.  I was so proud of all of them!  Thank you Elder's Bennett and Kuli.  Your strong arms and backs saved our lives!  Without you, we would still be raking...

Stress Relief

 

Remember my last post?  Well...

 

After a few sleepless nights, some crying, and tentative plans made for the future,  I was finally able to get a copy of my current insurance coverage.  I studied it line by line, combing over my policy and all the little microscopic footnotes.   I could clearly see that I did have coverage for the injectable drugs that two of my boys need and they were covered under the medical portion of my insurance, not prescription.  Despite being told on no less than five occasions something to the contrary, it means that they are subject to deductibles and out of pocket maximums!!  

 

I promptly drove to the Altius offices and spoke with a representative, showing her what my policy clearly stated.  She apologized for all the confusion and promised that she would get my account straightened out. The root of the problem seems to be outdated computer programming that does not allow the medical side of your plan and the prescription side to be seen at the same time.  (C'mon people, this is 2012!)  After having had so many customer service people get it wrong, it was nice to talk to someone who appeared to know what she was doing.  She did not disappoint!  Within 3 days, all my screwed up claims were fixed, my account had been sent to the proper billing teams, and a check had been issued back to me for overpayment on Mason's medication. 

 

I could kiss that girl!

 

So, a payment of a minimum $30,000 per year, which would only increase as the boys get bigger, has now become a maximum out of pocket of $9,000!!!

 

I never thought I would be so excited about paying $9K in medical a year!!   A few weeks ago, I was complaining about how high my out of pocket maximums were.

 

 

Reminds me of the saying "How do you make a man happy?  Take away everything he owns...And then give it back to him." 

STRESSSSSSSSS!!!

Seven little vials of medicine.  Seven vials delivered to my house once each month.  Medication my boys need to be tall enough to drive cars and get jobs.  Medication with NO generic equivalent, nor competing manufacturer.  Seven little vials that hold less that six teaspoons combined.  (The whole story behind the need for this can be read here.)

These little harmless looking vials have taken over the past three days of my life.  They have made me cry my eyes out, given me severe migraines, and sent me on wild goose chases through websites and paperwork involving insurance coverage.  They have caused me to look for part-time jobs that have great insurance benefits, and shop for home equity lines of credit.

Humph!   Maybe it isn't the drug that is the bane of my existence, but the insurance company.

Originally, my insurance covered the boys medication at the cost of $60 per boy, per month.  Excellent coverage actually, for a medication that runs over one hundred thousand dollars a year for the two of them combined.  It is so expensive that I almost felt bad for my insurance.  Almost...

Every year, our company takes a look at insurance and usually adjusts policies in order to keep insurance sort of affordable.  I begged my company (actually begged my brother in law who runs the place) to not make any changes this year.  I did not want to give the insurance company ANY reason to change the prescription benefit.  I was guaranteed that no change would be made to prescriptions.  We were getting a new plan despite my protest.  As you probably have guessed from the title of this post, things most definitely changed.

From $120 total per month to (drum roll please) $2300 PER MONTH!!!!  Yep, they decided that I need to pay 30% of the cost as a monthly co-pay.  As you may be well aware, co-pays do NOT count towards deductibles or maximum out of pocket costs.  I'm no mathematician but I can easily figure out that $2300 per month is going to cause a serious change in our standard of living.  (It may be a very cold winter...)

Tomorrow is Monday and I am hoping to find a ANYTHING in our policy that will get the insurance to at least count the money towards our maximum out of pocket, or even pay at a higher percentage since I have no other drug (generic or otherwise) available to me.  In all my digging around today, I may have found some verbiage to my advantage, but, I cannot find my actual policy in my online account.  (The policy they have listed is from last year, stupid huh?)

So, one more night of insomnia awaits me as I try to figure out just how we will pay for this drug. If  I find out that our policy specifically states that the drug cannot be paid under medical benefit and therefore is not subject to deductibles or out of pocket maximums, I may have to go to plan B.  Just got to figure out what exactly plan B is!

Wish me luck.

A Whole Decade!!!

Ten years ago, the loves of my life made their entrance into this world.  Gosh I love them ten times more than I did before.

What a difference a decade makes.

                                                   Then...

                                                                    And Now!

Carson, Jaxon, Amanda, Mason

Happy, Happy Birthday beautiful babies!!  Don't grow up too fast...

You Get What You Need

Continued...(from here)

In my adult life, there have been a few things I've really wanted. I really wanted the first little baby I was pregnant with, I really wanted Mom to outlive Dad, and I really wanted autism to skip my kids. And, I just assumed that all those things would go just the way I had planned.

Sometimes, things don't go as planned. They go the way they should. Painfully better.

I thought the loss of our first baby would kill me. I have never felt pain as deep as when I was told that the 12 week baby we had simply named Junior, was in my tube and could not be allowed to continue to grow. The pregnancy had to be ended immediately. It was a crushing blow that only got worse when I found out that my remaining tube was completely blocked. Our options for having a family suddenly changed. I was angry, hurt, deflated. And as life goes, it wound up being the best thing to happen to me.

After two more years, thousands upon thousands of dollars, and 5 frustrating attempts at IVF, we were finally pregnant.  Pregnant with four of the most incredible blessings I have ever received. A pregnancy that never would have happened if not for the loss of the first baby. Four little miracles that survived despite serious prematurity and have become the reason I exist.  Four teeny babies who are turning ten in a couple of weeks.

I learned that I don't know the whole picture. That I can only see as far as today. That sometimes what I want isn't what I need.

Coming to the realization that Mason and Carson are autistic was not what I wanted. Having Mom die two years ago wasn't how I'd planned things to go either. But, I learned from the loss of my little Junior that there had to be a reason things hadn't gone the way I wanted.

When Mom died, I lost the buffer between me and my dad. She always promised us that she would outlive him and that we wouldn't have to care for him in his old age. Dad had quintuple bypass surgery a number of years ago so I always assumed that he would be gone before her. But now I believe Mom left early to give Dad the opportunity to get to know his children.

Dad had heart valve replacement surgery in January and I had the privilege of helping care for him. Had Mom been here, I would have just let her be the one to stay in the ICU with him, and maybe I would visit for 20 minutes. Instead, I got to hang out with him for four days. 

I really thought that I would never want to get to know him...I was wrong.

Like I said before, I see the boys in my dad, and I really love my boys. When they do something quirky, something exactly like Dad would do and I would have found irritating, my feelings about my dad change. It was hard to love my autistic father but loving my autistic boys is easy. My boys have completely changed the way I see Dad.

One day I hope my boys find a woman who loves them as much as my mom loved my dad. Someone who sticks with them, even when things are really tough. A woman who is willing to spend 53 years of her life loving them in spite of their quirks. And I really hope they have children that can see through their autism and learn to love and accept them for who they are.

Like I finally have with Dad.

You Can't Always Get What You Want

 This is my Mom and Dad,  the people who put everything on the line for the 9 children that made up my crazy family.  I have a few fond memories of childhood but, the one thing that I will always remember is that my dad was mean. The constant chaos of having so many children crammed in a small home (with only one bathroom,) was more than he could handle.  Dad yelled a lot.  I was very afraid of him.  He was very unpredictable and we never knew if our actions would cause him to come unglued.  I constantly walked on eggshells.  I remember hiding in the closet with my sister (and BFF,) Jeanna, whenever Mom wasn't home in order to avoid his wrath.  It was difficult to have a conversation with him (still is) because he is ADD and obsessive-compulsive which makes him want to talk only about the things that interest him. and usually bore me.  Any relationship we had with Dad went through Mom.  She was the go-between, the buffer, the peace keeper.  Mom has earned her spot in heaven for all the times she refereed and stuck up for us, keeping Dad's full anger from landing on us.

I think I always believed that I wouldn't ever have a relationship with Dad.  He shows a lot of quirky behaviors and it is difficult to get to know him.  A lot of his behaviors really drove me crazy.  From his obsessive need to brush and floss at precisely 9pm, to his constant talk of his childhood or days in the Air Force, to his ability to get so engrossed in a game of Football on TV that he completely shut the world out, it was just tough to break through and bond with him. 

After a particularly bad time, Mom was talking about leaving.  Dad realized something wasn't right, and my mother convinced him to go to counseling. I think he learned a lot from that experience. The one thing that Dad has always had going for him is that he is teachable. He learned some coping skills while in  therapy that have made it easier for him to navigate life. 

Then my brother's three boys were diagnosed with autism.  Their behaviors were exactly like Dad's.  A lightbulb went on in our minds, and the mind of our mother.  As we learned more and more about autistic traits, we realized that Dad was also autistic.  We finally knew that he wasn't trying to be a mean man, he just lacked the ability to respond to frustrating situations in socially acceptable ways.  It took some time but, eventually, I began to see Dad in a different light.  I started to feel compassion instead of dislike, empathy instead of anger.  But still, I had no desire to forge a relationship with him. 

Carson, Mason

Then God saw fit to send me two autistic boys of my own. Two little identical twin boys that have done nothing but melt my heart since the day they were born. Two boys who exhibit the very same behaviors that my Dad has. Boys who have meltdowns when overstimulated, have little patience for small children, and obsessively take their growth shots at 9am and 5pm. (Sound familiar?) I began to see my dad in my boys, or, was I seeing my boys in my dad?

Part two in a couple of days...

Recently Published

I've been trying to get into writing to make a little money to pay for my travel habits (and a few others.)  I was recently published on a couple of websites.
Check them out if you have a minute:

This one was published on a major mommy blog called Shopaholic Mommy.  It is their most read article to date!

http://www.shopaholicmommy.com/family-life-2/autism-should-i-worry/

Another has been published on a site called Thriving With Autism where I will become a regular contributor:

http://www.thrivingwithautism.com/my-fight-if-schools-can-integrate-deaf-kids-why-not-my-autistic-kids/
 If you know somebody who has, or if you have an autistic child, please share the site with them.  You will find a ton of useful information there.  You can also steal their awesome autism ribbon and share it on your own blog if you are so inclined.

Happy reading!

Kimber Academy

The quadruplets attended a private school this year.  It's called the Kimber Academy and it teaches core classes only.  Classes are only held 3 days a week, 4 hours a day leaving the rest of their education to be done at home.  Much of what they teach involves getting the students to determine their own interests and self direct their learning. (Wouldn't it be great if that were an option in the public system?)  It was a great help in giving us a blueprint for our homeschooling.  Not sure if we can afford it next year, but the kids want to return if we can.

For the first time in years, the quadruplets got school pictures!

Marvelous Mason

Cute Carson

Action Jaxon

Miss Amanda Panda

I thought I'd share a few photos from their fun times at the Academy!

 

Amanda and her bestie Emma dissecting a frog.



The girls really got into it!  My boys, not so much...



The final day of school, we all went and climbed Ensign Peak



Ready, Set, Go!



Mason and Carson...Always the twinners!

Amanda, Emma F., and Emma S.



We made it to the top!
Amanda, Mason, Carson, Brother Thatcher (their teacher) AKA Sifu, me, and Jaxon

The entire school!

After our beautiful hike, it was off to City Creek Park for a little picnic!



Notice who Amanda is hanging out with?  Yep, they are inseparable!



A little garden snake was the life of the party!

Tons of fun by the creek.

We met a lot of really wonderful new friends this year, friends who the quads definitely want invited to their birthday party!  But that will be another day, another blog post...