When You Grow Up!

It’s time for another installment of No Filter Friday.  This is the time that I love to share things that Skylar has said or done that have left us red-faced, laughing, and sometimes speechless.  If you are new to my blog or missed previous posts, you can click here for a complete list of No Filter Friday stories.

Skylar has always been a fan of superheroes. Who can blame her?  Superheroes ROCK!  She loves Superman, Spiderman, Batman, & Mr. Incredible. She definitely goes through phases of what she is obsessed with and during those phases that is what she wants to talk about.  Today’s story is about one of those conversations.

A couple of months ago Skylar was sitting at the kitchen table while Chris and I were cleaning up the kitchen. The conversation started off with a simple question from Skylar:

Hey dad? What do you want to be when you grow up? (I thought it was funny that she was asking this as Chris is 39 and has been in the Air Force for over 19 years) The rest of the conversation was as follows:

Chris:  Well, I am grown up and I’m in the Air Force.  I’m not exactly sure what I want to do when I retire.

Skylar:  When you grow up do you want to be able to fly like Superman?

Chris:  No, not really.

Skylar:  Do you want to be able to run really fast?

Chris: Nope.

Skylar:  Do you want to be invisible?

Chris: Not really buddy.

Skylar:  What about smart?  You wanna be smart when you grow up?

Chris:  What?? You don’t think I’m smart now?

Skylar totally started laughing & said:

Daddy, you are so funny!  So…do you wanna be smart?

So thankful for these sweet moments that we have with Skylar!  I love her brutal honesty.

Hope all of you have a great weekend!

JuJu

*I was nominated for one of Babble’s Top Autism Spectrum Blogs.  I’m totally honored by this.  If you read my blog and you have found it helpful I would appreciate your vote.  I am currently #19.  You can click here and search for I Am JuJu, then click on the “I Like This” icon.  I believe you can only vote for one blog per computer/device. Thank you so much for your support!  I love sharing our journey with others and I truly hope that it brings hope and understanding regarding Autism.*

Hello? I Need a Band-aid!

It’s time for another installment of No Filter Friday.  This is the time that I love to share things that Skylar has said or done that have left us red-faced, laughing, and sometimes speechless.  If you are new to my blog or missed previous posts, you can click here for a complete list of No Filter Friday stories.

Our story for this Friday happened in 2006.  For those of you who don’t know, Skylar not only has Autism, she also has Epilepsy.  In January of 2006 Skylar had not had a grand-mal seizure in almost 4 years and her neurologist suggested that we try to decrease her seizure meds.  We did not give her the mid-day dose of Depakote that day (a Thursday) and on Saturday morning I awoke to find Skylar seizing.  I immediately called 911 and they had to give her a LOT of medicine to stop the seizure.  In fact, the ER doc noted that she had been given enough medicine to “sedate a horse”.  When Skylar seizes, she does so with gusto!

Skylar did not wake up until later that evening.  When she did start to come out of the sedation the first thing she said was “I have a BAD headache”.  The doc said “I bet she does.  She had a LOT of medicine.”  She had been given benzodiazepines, which are not usually recommended for individuals on the autism spectrum as they can cause severe hallucinations.  Skylar had been given them before and we knew this, however we knew she wouldn’t stop seizing on her own.  Due to the severity of the seizure and some breathing issues they decided to admit her for observation.  Once she was settled in her room, her nurse came in and asked Skylar if she could get anything for her.  Skylar’s response:  “I still have my headache so I could really use a band-aid!”  The nurse giggled, said “Okay” and walked out of the room.  Skylar has always been a huge believer that band-aids help everything!  If she had a tummy-ache she would put a band-aid on her stomach.  We went through a box of band-aids at least every week.  I would rather just give her a band-aid than give her medicine.  If band-aids gave her comfort that was totally fine with us.

More than a half hour passed when the nurse came back into the room and asked how everything was going.  Skylar looked at her like she had 2 heads.  She tapped on her forehead and said to the nurse:

“Hellooooooo?  I NEED a band-aid!!”

The nurse was stunned.  She looked at me and said “Oh my!  She was serious about the band-aid?”

I said “She sure was!  I can assure you that if you just bring her the band-aid, she will not ask you for another thing during our stay.”

The nurse said “I am so sorry!  I totally thought she was kidding.”  She ran and got the band-aid and gave it to Skylar who happily put it on her forehead.

The next morning, the neurologist who was on-call came in to see her.  He saw the band-aid and said:

“Skylar, why do you have the band-aid?  Did you hit your head?”

Skylar said “Why do you think I have a band-aid on my forehead?  I already told the nurse….I HAVE A HEADACHE!!!”

The doctor immediately started laughing and said “Wow!  I wish that band-aids could fix everything like that!”  He flipped open her chart and turned to me and said “That’s right.  She has autism!  I should have known by her matter of fact response.”

I quickly apologized and he said “Are you kidding me?  I wish that I could be that brutally honest with people.  It is really refreshing!  She totally made my day!  I LOVE HER!”

We were so thankful for the comedic relief that Skylar gave us during a time that was extremely scary and emotionally draining.  We were also thankful for a doctor that had a wonderful sense of humor and was completely understanding and accepting of who Skylar was.

I hope that you all have a great weekend!

JuJu

*I was nominated for one of Babble’s Top Autism Spectrum Blogs.  I’m totally honored by this.  If you read my blog and you have found it helpful I would appreciate your vote.  I am currently in the 50’s.  You can click here and search for I Am JuJu, then click on the “I Like This” icon.  I believe you can only vote for one blog per computer/device. Thank you so much for your support!  I love sharing our journey with others and I truly hope that it brings hope and understanding regarding Autism.*

She’s Not That Bad!

I can’t believe it is already that time again!  That’s right folks, it is time for another installment of No Filter Friday.  Fridays are the days I share our stories where Skylar has left us red-faced and laughing due to her lack of filter.  If you are new to the blog or just missed an installment click here to read them all.

Today’s story actually happened on Wednesday of this week.  The girls are taking a pom/jazz class each Tuesday at our local YMCA.  The lovely gal, Heather, who is teaching the class had hoped to put together a class for kids with varying degrees of special needs, but unfortunately there was not enough interest.  I had REALLY wanted Skylar in a special needs class.  She has hypotonia (low muscle tone) and it affects her left foot pretty severely.  She is also pretty clumsy and has difficulty controlling her body at times.  I decided to let Hailey do dance and hold Skylar out for awhile.   Hailey started her dance class and after a few weeks Skylar wanted to join in.  Heather was happy to have her  and I felt comfortable with Skylar being in a class with younger students.

Each week there seems to be at least one new student and each time I wonder how they will react to Skylar.  A couple of weeks ago we had a new girl join the class and I noticed that she stared at Skylar a lot and whenever she said or did anything this girl would lean over to her friend and laugh.  That probably doesn’t even bother Skylar, but as a mom that hurts me to the core.  On Tuesday before Skylar’s class started I leaned over and whispered in her ear “Skylar, I want you to not dance right next to that little girl because she isn’t very nice.”  Skylar said “fine” and ran off.  As they were warming up I looked over and noticed that Skylar had moved directly beside that very girl.  I held my breath as I watched Skylar talk to her and hoped that she would be kind.  I couldn’t hear what they were saying to each other as the music is usually up pretty loud.  As I started to chat with another mom, Skylar yelled very loudly as she pointed at the little girl  “HEY MOM!  SHE’S NOT THAT BAD!”

I was horrified!  I was pretty sure only one other mom realized what she said and it wasn’t the girl’s mom so I was super thankful.  I quickly said “That’s great buddy!  Pay attention to Ms. Heather & keep on dancing!”  The class actually went really well after that.  I would pay money to know what Skylar said to her.  Maybe she told her that she needed to be nice to her.  Knowing Skylar she probably told the girl she liked her shirt and the girl appreciated the compliment.  Either way, I’m glad that all is well in dance class now!

Hope all of you have a great weekend!

JuJu

He’s Better Than You!

It’s that time again!  Time for another installment of No Filter Friday.  To view past stories that have left us laughing and red-faced click here.

I wasn’t sure that I was going to be able to post today as we’ve had a crazy couple of days with Hailey being sick and then coming down to Phoenix for both of the girls to have EEGs done.  We kept them up super late last night and then got them up at 5:00 this morning in order to have them sleep deprived.  Unfortunately with sleep deprived children come sleep deprived parents.  We got to a point today that we were laughing at things that probably weren’t that funny and getting annoyed by things that probably weren’t that annoying.  Thankfully, after the EEGs were done we were able to come back to my parents’ time share and sleep for the better part of the afternoon.  When I woke up I knew that I wanted to share a little about what happened during Skylar’s EEG today.

Today was Skylar’s 7th EEG.  She should be an “old pro” at this but unfortunately her last EEG experience was a bad one.  Her neurologist in New Mexico ordered a 72-hour EEG that required a hospital stay.  As they were attaching the many electrodes to her head, they would place a piece of tape over it and then squirt this liquid from a bottle onto her head.  When I asked what the liquid was the tech replied “oh, it’s a glue that helps keep the electrodes in place”.  I remember thinking that it would not be fun to get that out of her hair.  And boy was I right.  The poor gal that they sent to unwrap her head and remove those electrodes got seriously screamed at by Skylar.  It was a painful experience to watch and I can’t imagine how painful it was for Skylar to endure.  At one point Skylar swung her arm at the tech and screamed:

“THAT FRICKIN’ HURTS LADY!’

Oh yeah, that was fun.  Needless to say that was embarassing and we ended up picking glue out of Skylar’s hair for over a week.

When we told Skylar that she was having an EEG done this week she was apprehensive.  Who would blame her?  She still has a bald spot on top of her head from a former EEG.  When we were called back this morning the tech told us that she had a student with her who would be helping her with the test.  He did a really great job placing the electrodes and letting Skylar touch the cleaning gel and the sticky paste.  Once she was all hooked up the testing went really well.  She was so tired that she fell asleep easily for the part of the test she needed to sleep.  I was overjoyed with that!

At the end of the test the female tech started to unhook everything.  She was so gentle and not once did Skylar scream or wince.  About half way through removal of the probes, Skylar looked over at her and said:

“The guy does this a lot better than you do!”

Of course I said “Skylar, that’s not nice to say!”  I’m not sure why I continue to say that because I know exactly what her response will be.  And of course she doesn’t fail to deliver:

“Well, you are doing fine, but he’s just better than you!”

At this point I just apologize to the tech who is actually smirking.  She was gracious enough to laugh it off.  It really does no good to tell Skylar that what she said wasn’t kind as she just replies with a “sorry” and continues to recite movie lines under her breath.

I’m destined for a life full of moments such as these and that’s totally okay!  At least I’ll have tons of funny stories to tell!

Hope you all have a great weekend!

JuJu

Poor Great-Grandma!!

Yep, it’s that time again already. Time for No Filter Friday.   I love sharing the funny things that Skylar says and does.  Someone asked me this week how long they thought I could keep up the No Friday Filter series and my answer was “for a very long time!”  Skylar is constantly saying things that make us laugh and I have years of stories to tell so we are all set.  Click here to read any of the other No Filter Friday stories you may have missed.

Our girls are very blessed to have 3 of their great-grandparents still living!  My dad’s father passed away when I was in the 1st grade but I still have fond memories of him.  My mom’s parents (MeMe & Pa) live in Tucson so we got to see them weekly while we lived there and have already seen them a couple of times since we’ve been back in Arizona.  We were excited when we moved to Ohio as that put us only 3 hours from my dad’s mom (Grandma Adang).  We were able to visit Indiana multiple times and each time we would leave, Skylar would ask “when are we coming back?”  When we moved back to the desert southwest 4 years ago, we knew that it would probably be a significant amount of time before we saw Grandma Adang again.  We were surprised when only 1 year later Grandma Adang made plans to come to Albuquerque to see the Albuquerque International Balloon Fiesta.

We were all excited to see Grandma Adang, but of course Skylar was particularly excited.  She is really obsessed with how people are related.  The day Grandma was due to arrive she said:

“I can’t wait to see my great-grandma.  Mom, are you excited to see your grandmother?  Grandpa, are you excited to see your mother?  Grandma, are you excited to see your mother-in-law?”

We all loved how she was so excited that she knew how everyone was specifically related to each other. She was very proud of this knowledge.  My dad was already on his way home from the airport with Grandma Adang by the time we got out of school/work and headed over to their house.  When they pulled into the driveway Skylar could barely contain her excitement.  She ran down from upstairs where she had been playing and rounded the corner just as they walked in the door.  Sklyar sucked in her breath,  and with the most excited, squeally voice I’ve ever heard screamed:

“GRANDMA ADANG!!! You…you are so much OLDER than the last time we saw you!”  I immediately gasped and apologized to my grandmother.  I said “Skylar, that’s not really nice to say to grandma is it?”  Instead of apologizing she said “Well look at her mom, she does look a lot older than the last time I saw her.”

I just stood there….speechless.  Bless Grandma Adang’s heart that she just laughed and said “Skylar, I really love you!”  Skylar ran up and hugged her and said “Grandma, I’m so excited you are here to see us and I’m REALLY glad you didn’t die!”  (Oh wow!  There was just not anything that I could say at this point!)

Nothing was ever mentioned again about grandma’s aging while she was there.  I’m so thankful to have a family with a sense of humor!  When you have a child with autism in the family, that is a necessity!!

Have a great weekend!

JuJu

An Innocent Question!

Welcome to another installment of No Filter Friday.  I’ve really enjoyed sharing some of our funny times with Skylar.  Click here and here to read my previous No Filter Friday posts.  One of the things about having a child with autism is that you never know what they are thinking and what they are going to say.  Sometimes this is funny, but other times I get a bit anxious about what might possibly come out of Skylar’s mouth.  Even in times of sorrow, Skylar’s lack of filter brings joy to our family.  So is the case with this week’s story.

In April of 2009 we received a call that nobody wants to receive.  Chris’ sister Diane called to say that their dad, Don, had been taken to the hospital with what appeared to be symptoms of a stroke.  Within 24 hours we would find out that it was not a stroke but a brain tumor and that it was inoperable.  Don started treatment of chemotherapy and radiation but unfortunately did not show any improvement with these treatments.  Chris made a trip out just a few weeks later to spend some time with his dad and stepmom.  Chris’ mom and dad had divorced 30 years prior and both were happily remarried to wonderful people.

A few months later, in November,  the doctors told Don that they had exhausted all forms of treatment and that if there was anything he wanted to do or anyone he wanted to see that he should make arrangements to do that. We got a call from Don’s wife, Kathy that Don wanted to see Chris. Chris’ sister and step-siblings lived in town and his brother was already there.  Chris was in Delaware at the time on a 3 month TDY (business trip) testing operating systems on an aircraft.  Chris immediately went to his supervisors and explained the situation.  They were wonderful in releasing him from his obligations there in Delaware.  Chris was on a plane the next morning for California.  Shortly after arriving, Don asked Chris if I would be able to bring the girls to see him.  I was beyond touched that Don would request to see our girls and we made arrangements to travel a few days later.

As you can imagine, this was a difficult trip to prepare the kids for.  Hailey is extremely sensitive and many tears were shed before we even left home.  I knew that she would be ok although very emotional.  Now Skylar was a different story.  She immediately started asking tons of questions.  Questions that I had absolutely no answers to.  I tried to prepare her for multiple things.  One thing was that Don looked very different from the last time she had seen him as he was extremely swollen from the steroids and radiation.  One thing that I discussed with her in great length was that if she had any specific questions once she saw her Grandpa Don that she should ask either Chris or me in private.  When we arrived in California and saw Don for the first time, both the girls did really well.  Skylar did not ask any inappropriate questions and for that I was very thankful.

On the second day we were there, Don was brought to the table for lunch.  Skylar said she wanted to sit next to him while he was eating and so she did.  She started asking him simple questions & he answered her right back.

Skylar:  Grandpa Don…why is one of your eyes shut?

Don:  It doesn’t work anymore.  (as he used his fingers to open it)

Skylar:  Grandpa Don…this band-aid is peeling off; I think you need a new one, don’t you?

Don: Thanks Skylar, but I think this one is fine.

Skylar:  Grandpa Don…what is that stuff in your bowl?  It looks really gross.

Don:  This is my cereal mix.  It’s really good.  (Don LOVED cold cereal.  He would mix lots of different kinds together and eat them.)

I was so touched with how patient Don was with Skylar especially because he wasn’t feeling well.  About this time I saw Skylar cock her head to one side.   I  was immediately anxious as this is what Skylar does when she is really thinking about something she wants to say.  Before I could make a move Skylar blurted out:

“Grandpa Don…do you miss your 1st wife Vicki?”   Without even hesitating a moment Don shook his head and said “Nope.”  Skylar said “OK” and kept eating.  I immediately turned five shades of red but the entire room erupted in laughter.  I could have never imagined that she would ask him that as Don and Vicki divorced 20 years before she was born.

Kathy was laughing so hard and she said “Wow!  We needed a good laugh.  Thank you Skylar for making us laugh today.”

I was immediately thankful that Skylar’s innocent question had brought laughter into a home that had seen so many tears in the months prior.  I loved that Don was so gracious in entertaining her questions. And I was so thankful that we all got to see Don again.

Don passed away Christmas morning and although it was a sad time for all of us, we are thankful that Don is now in Heaven, healed of his cancer.  Chris had the opportunity to speak at Don’s “Celebration of Life” service shortly after his death.  He paid tribute to a man that had helped him make important decisions regarding his future and who had instilled a wonderful sense of humor in him.  He shared many humorous stories from years past, but he ended with the short conversation that Don and Skylar had shared the month prior.  It was such a special time as the entire crowd went from crying to laughing, which is what Don would have wanted!

I hope all of you have a wonderful weekend!

I will share Part 3 of Hailey’s story on Monday.

JuJu

The Winner!

Welcome to the 2nd installment of “No Filter Friday”.  If you missed the 1st week you can click here to read it.  I named this Friday series “No Filter Friday” because like so many children on the autism spectrum, Skylar says whatever is on her mind.  We actually find it quite refreshing that she has no filter.  Sometimes we wish that we could be as brutally honest as Skylar.  Not only are Skylar’s thoughts unfiltered, so are her reactions to everyday situations.  Skylar often times overreacts to a situation that most people would brush off.  We have grown accustomed to Skylar’s reactions and are able to diffuse the situation, but of course we always get horrified looks from those around us.  If you aren’t used to screaming in everyday situations, it can be quite shocking and catch you off guard.  So without further ado, I bring you the story of “The Winner”.

In January of 2008, our family went on a Caribbean cruise that my mother and I had both earned selling jewelry for a direct sales jewelry company.  We actually both joined Just Jewelry in order to earn money to defray the cost of Skylar’s autism treatments.  My mom stills sells Just Jewelry and donates ALL of her profits to help Skylar.  Check her out here.  When my sister, Jenny,  found out that we were taking the girls on the cruise, her family decided to all come along as well.  We were thrilled to be going on such a nice vacation together and set sail for 5 “fun-filled days” in the Caribbean.

Not long before the cruise, Skylar had started a new behavior.  At every meal, she started picking a piece of each food she was eating and setting it to the side to be eaten last.  So, if she had hot dogs and french fries, she would pick one piece of hot dog (she only eats them cut up) & a french fry (usually the largest or longest) to save for last.  We have no idea where she came up with this new obsession but it didn’t bother us.  As parents, you have to pick your battles, and the obsessive nature with which she chose her winner at each meal was just not a fight we wanted to take on.  This behavior of picking “the winner” continues to this very day.

If you’ve never been on a cruise, it is a non-stop food fest.  When you first board the ship the cabins are not ready as they are still cleaning them from the group who just disembarked.  In order to keep everyone happy there is a giant buffet waiting for you to keep you occupied while you’re waiting to get into your rooms.  Five minutes after boarding, Skylar found the all-you-can-eat french fries.  As we got our food and sat down at a table Skylar quickly started scouring through her fries to find a winner.  Within moments her eyes got huge and she smiled as she pulled what I must say was the longest french fry I’d ever seen.  As she put it to the side, my nephew Ben asked “Sky, what are you doing with that fry?”  “That is my winner” she replied “I will eat it last”.  Ben got a really funny look on his face and said “Oh, cool.”  All the kids have come to learn and love that Skylar does some quirky things.  They really just go with the flow and I love that about them.  Shortly after the explanation of “the winner” my sister sat down at the table next to Skylar.  Jenny finished her plate of food and was sitting back relaxing when all of a sudden she reached over and grabbed “the winner” off Skylar’s plate and put it in her mouth.  OH! MY! WORD!  What happened next still makes me laugh to this day.

Skylar screamed at the top of her lungs “AUNT JENNY! YOU STOLE MY WINNER!”.  Jenny truly looked horrified! She immediately tried to console Skylar as EVERYONE around us looked on in horror.  You could tell they were all thinking “what in the world is this woman doing to this kid?”  As Skylar continued screaming “MY WINNER!  MY WINNER!”, Jenny turned so red.  Ben looked over and said “Mom! You totally stole her winner! She was saving that to eat last.”  Poor Jenny was so flustered as she said, “I had no idea that she picks a winning fry to eat last!”  At this point, Chris and I were trying to calm Skylar down, but could not control our own laughter at the entire situation.  I assured Jenny that this was a new thing that Skylar had started and there was no way that she could of known.  The situation was diffused as Chris said, “Skylar, why don’t you go ahead and pick a new winner?”  So she did and put it back on the side of her plate.  But she first looked at Jenny, pointed to her fry and said “That is my winner. Do not eat it!”.   We all laughed hysterically!  Jenny’s husband Jeff had a priceless look on his face.  He jokingly commented “Wow! We’ve only been on the boat for 10 minutes.  I can’t imagine what all will happen over the next 5 days.”

My favorite part about “the winner” was that for the rest of the cruise all the kids started picking their own winning french fries or tater tots to save for last.  Skylar didn’t have any more outbursts like that, but she also made sure that she did not sit next to Aunt Jenny at any other meal!

Have a blessed weekend!

JuJu

No Filter Friday

I often hear from family and friends that they love to hear about the funny things that Skylar says and does.  Like so many children on the autism spectrum, Skylar says whatever she is thinking.  We often find it very refreshing that Skylar has no filter and just shares whatever is on her mind.  However, there have been times when her lack of filter and honest demands have left me red-faced and absolutely speechless.

So I have decided to make every Friday a “No Filter Friday”. A time for us to share those funny stories or quotes that keep us in stitches.

For the the premiere of “No Filter Friday” I’d like to tell you the story that we affectionately refer to as “Diane’s Rehearsal Dinner & the Grilled Cheese Sandwich”.

This past May, the 4 of us traveled to central California for the wedding of Chris’ sister, Diane.  The girls were absolutely thrilled to attend the wedding as they think Diane is “Uber Cool”.  Like most weddings, all 4 of us attended the traditional rehearsal and dinner the night before.  Diane and Adam held their rehearsal on the property of Adam’s aunt.  It was absolutely beautiful and we were thrilled that it was outside so that the girls could run around and play.  In fact shortly after we arrived, the girls disappeared with a group of children to play on the backyard swing set.

As the rehearsal ended and we were getting settled for dinner, Diane announced that Adam’s aunt had prepared a delicious lasagna, bread & salad.  My first thought was “I’m not sure if Skylar will eat this, but I’m hoping she doesn’t throw a fit”.  Italian is Hailey’s favorite, so we knew that we were safe there.  As we got the girls settled at the kids’ table, Adam’s aunt walked up to me and said “here is the grilled cheese for your daughter”.  I was confused! The rest of the conversation went as follows:

Me:  I’m sorry??? What?

Aunt: This is for your daughter.  Isn’t she yours? (pointing at Skylar)

Me:  Yep, she’s mine.

Aunt:  Well, she told me that she can not eat lasagna, but that she could eat a grilled cheese sandwich.

This wonderful woman actually stopped what she was doing and made Skylar a grilled cheese.

Me: Oh. My. Goodness. I am so sorry! 

Aunt:  Oh, it was no problem.

I immediately turned red & then turned to Skylar.  I told her that I couldn’t believe that she had asked this lady that she didn’t know for a grilled cheese.  She responded:  “What?! I don’t like lasagna & I really wanted a grilled cheese.”

You had to see the expression on her face.  It was of total innocence.  She truly did not see anything wrong with asking for what she wanted.  At this point several of the people that we were sitting with asked what happened.  As we told the story to them, they immediately started laughing. Scottie, one of the guys at our table said “Oh my gosh! That is AWESOME! I totally love her!”

I have to agree with Scottie!  Only Skylar could ask for exactly what she wanted, get away with it, & give us a story that will keep us laughing for years to come.

I hope you’ve enjoyed this first installment of “No Filter Friday”.  You can be sure that there are many more to come!

Have a GREAT weekend!

JuJu