Another Giveaway from Goosie Cards!

I was so thrilled when Jennifer, the owner of Goosie Cards, contacted me to do another giveaway!  I LOVE these cards and all the possible ways to use them.  These are the cards that I gave my 2 y/o niece for Christmas.  Her’s was an alphabet set.

Since gifting them I have thought of multiple ways to use them for my girls.  As most of you know, my girls are 11 and 13.  I knew I didn’t need to make them cards to learn their alphabets, but I knew that I wanted to make them a set to help them stay on task in the mornings. Both of them need multiple cues to stay on task and I figured that visual cues would be so much better than the constant verbal cues that only lead to frustration.  No matter how many times I ask them to do something, I can walk in the room and there they sit, looking dazed and confused.  I’m so tired of saying “Did you brush your hair?  Did you brush your teeth?  Did you make your bed? etc., etc., etc.”!!!! Mornings are difficult for us!

So I decided to make a set of cards for both of the girls with personalized pictures. They will include:  pick out your clothes, take a shower, brush your teeth, brush your hair, make your bed,  and put on your shoes.  They will be hole punched, on a ring, & hang on a hook.  I had really hoped to have the cards to show you, but alas, this month has been so busy and I just haven’t had a chance to order them yet. I’ve taken the pictures, now I just need to upload them & add the text.

Check out the Goosie Cards website for some great new card ideas!  These cards are really great for kids of all ages!  Alphabet cards, family cards, cards for therapy, etc. These would be great for speech therapists and behavioral therapists!

Leave me a comment, here on the blog, to be entered into the drawing for a set of 10 cards!  This giveaway is open to everyone, including my international friends!

“Like” Goosie Cards on Facebook here and follow Goosie Cards on Twitter here to stay up to date on all their specials, giveaways, and sales.

This giveaway will close this Saturday, April 28th at midnight Eastern time.

Good luck to all of you!

Have a great week!

JuJu

The Talent Show!

Last Thursday Skylar performed in her middle school talent show.  I was so proud of her when she came home and told us that she wanted to try-out.  She loves to sing. She sings a LOT!  Most days she comes down the hill from school singing away.  That is usually an indicator that she is in a good mood.

I wanted to share with you why I am so proud of Skylar’s performance in the talent show.  Ten years ago I sat in a small room with a developmental pediatrician who told me that Skylar most likely would never speak.  He also told me that we would probably need to institutionalize her when she was a teenager and that she would be lucky if she could ever get a job bagging groceries when she was older.  I remember sitting in that office and saying “Dr. S, thank you for your time, but you REALLY need to work on your bedside manner….it SUCKS!”

I’m so thankful that I knew enough not to listen to that doctor and his very bleak outlook on Skylar’s life.  About a year later, Skylar found her voice and she has been using it to sing ever since!  Never let anyone tell you what your child can or can’t do!!

Below is the recording of her performance last week.  She sang ‘Free to Be Me’ by Francesca Battistelli. She sang this same song in her 5th grade talent show, but this year as the music started & she started to sing, we were surprised to see her doing movements to the song.  That was totally new! I got so tickled and couldn’t stop smiling & giggling.  My first thought was “That is AWESOME!”  I love her sweet spirit, her confidence, & her absolute ability to make people smile!  It doesn’t get any better than that!

Autism Bracelet Giveaway!

GIVEAWAY IS NOW CLOSED! CONGRATULATIONS TO BECKI ON WINNING THIS BEAUTIFUL BRACELET!

Hello Everyone!  Happy Monday to you!  I’m so thrilled to be giving away this beautiful autism toggle bracelet today.  My mom has been selling for a jewelry company for many years and they recently designed the bracelet above.  You can check out her website here.  My mom (and dad) have supported us through our journey with autism since day 1!

To have a chance to win this beautiful bracelet all you have to do is leave a comment here on this post.

****I HAVE RECEIVED SEVERAL MESSAGES THAT PEOPLE HAD A HARD TIME POSTING A COMMENT.  IF YOU GET AN ERROR SCREEN, PLEASE JUST SHOOT ME AN EMAIL HERE & SAY “PLEASE ENTER ME TO WIN” AND I’LL PUT YOUR NAME IN!****

****We are also selling these bracelets to help us with our fundraiser for Skylar’s bicycle.  If you would like to purchase one (or more) they are $20 each, which covers the cost of shipping to you in the U.S.  International shipping will be additional.   You can either mail me a check or I’ll put you in touch with my mom to use your credit card.  These would make a great gift to someone who has been affected by autism…parents, siblings, grandparents, teachers, therapists, doctors, etc.  With 1 in 88 children with autism in just the United States, that’s a LOT of people affected by autism.  I also have friends all over the world that have children on the autism spectrum.

To order a bracelet just shoot me an email at iamjujublog@yahoo.com and I’ll send you my address or put you in touch with my mom. (Her phone number and e-mail are also listed on her website!)

This giveaway will run through this Friday night, April 13th, 2012 at midnight (Eastern time), with the winner announced on Saturday morning.  Best of luck to all of you & I hope you have a fabulous week!

Make it great!

JuJu

Another Chapter in Hailey’s Story

The past couple of months I haven’t posted as much here on the good ‘ol blog.  I’ve been sharing my Project Life pages each Tuesday and occasionaly sharing a funny story about the girls.  The truth is that there has been a LOT going on.  We’ve been processing through information and emotions.  First and foremost my concern has always been and will always be about my girls and being sensitive to their feelings about what I share here in this space.  I’m so thankful for our family and friends that have walked this road with us and who have encouraged us to take our time in processing this information, as long as that may take.  I just really haven’t felt like sharing about any of this until now.

I have shared a lot about Hailey’s journey as an infant, being diagnosed with Failure to Thrive at 11 months old, and the subsequent placement of a G-tube to nourish her for the following 2 years.  If you missed any of those posts you can go back and read them here.  Shortly after moving to Arizona last April we started the process of having Hailey tested to determine whether or not she fell somewhere on the autism spectrum.  After a long, arduos process, we received a definitive diagnosis of Asperger’s Syndrome in February. For those of you who don’t know what Apsperger’s is, it is often times referred to as High Functioning Autism.  It falls under the autism spectrum and is usually characterized by difficulties in social interactions, along with restricted and repetitive patterns of behavior and interests. It is often times, though not always, diagnosed later than autism and PDD-NOS.

I want to share with you a couple of reasons why it took so long for us to have Hailey evaluated.  It is my hope and prayer that our story might help others in a situation similar to ours.

-Having our 1st child diagnosed with autism played a big role in our delay.  Hailey functions at a much higher level than Skylar not only academically but in everyday day life as well.  Because she is independent in so many areas our original thought was “She has just picked up some of Skylar’s quirky habits because they are around each other so much.”  I didn’t want to be THAT parent that thought “since I have one kid with autism, I bet my other kid is going to have it too.”  I didn’t want to overreact.  I didn’t want to have Hailey labeled if it wasn’t the case.  And honestly, I wished with every fiber of my being that I was wrong!

-Every one of Hailey’s teachers, since the 2nd grade, has approached me regarding Hailey’s difficulty with attention, staying on task, and forming friendships.  In meeting with those teachers we always seemed to come up with a reason that she might be “off”.  For the 1st half of 2nd grade Chris was deployed to Afghanistan and she really struggled emotionally with that separtion.  After he returned, she was less emotional, but still had multiple issues in the classroom.  In 3rd grade Chris was again gone for several months conducting a special study for the Air Force.  He ended up leaving that assignment early as his father took a turn for the worse and later passed away after a 9 month battle with brain cancer.  It was easy to attribute Hailey’s difficulties in class and her withdrawn behavior from other children to the fact that she missed her dad & just lost her grandfather.  However, in 4th grade, Chris was home and our lives were in a completely normal routine.  When her 4th grade teacher approached me shortly after Christmas with her concerns, I was aware that we needed to have some evaluations done.  Shortly after that we received word that we would be moving.  Chris and I agreed that once we moved and got settled in that we would request further testing.

After 2 weeks of being in her new classroom here in Arizona, Hailey’s teacher requested a conference with me. This gal had been teaching for over 30 years and clearly knew her stuff!  I knew what she was going to say.  “Difficulties staying on task.  Multiple visual cues needed to get back on task.  Extremely fidgety.  Would rather play by herself even though the kids in her class were inviting her to play with them.”  At this point I told her teacher about Skylar and the fact that she had autism.  I then said “I have had some concerns that Hailey might possibly have Asperger’s.  Would that surprise you?”  When she answered “Mrs. Coryell, that would not surprise me at all” I knew that my gut feeling was right.

Those of you who have been down the road of testing know it is not a quick process. There are many appointments, referalls, & lots of time to wait.  Prior to Hailey having the full neurocognitive testing done, we met with the psychologist for about an hour. She asked Hailey all sorts of questions and the two of them had a great rapport.  I was so thankful that we had been placed with this psychologist as I knew that Hailey would be willing to work with her as she had such a sweet personality.

Following the testing we had to wait several weeks to get the results as the psychologist had 7 hours worth of tests to go through and evaluate.  One Wednesday night, while we were waiting for the results, I had the opportunity to take Skylar and Hailey out to dinner before youth group at church.  Chris was working so it was just me and the girls.  We went to Red Robin and when we came out of the bathroom Hailey saw this picture.

I remember her saying “That is such a funny picture!  Who is that man?”  I told her that it was Albert Einstein and explained a bit about him.  I told her how there is a lot of speculation that Einstein had a form of autism, possibly Asperger’s.  She was so interested in learning more about him.  We talked about Asperger’s and other famous people from history that they believed had Asperger’s. We talked about how a lot of individuals with Asperger’s have difficulty forming friendships and some of them have sensory issues.  Hailey said “that sounds a lot like me.”  I’m truly thankful for what I know to be a door that the Lord opened allowing me to broach the subject with Hailey.  This conversation was integral in setting the ground work for us to share with Hailey later about her diagnosis.

We are already undergoing the process of getting the necessary help in place for her at school.  We have no doubt that Hailey will be even more successful in school now that we know how to help her.  I am really thankful for her teacher this year,  who has worked with us since the 1st day of school to help accomodate her needs in the classroom.  She has been wonderful in helping Hailey to have a successful 5th grade year.  We are diligently praying about what is the best setting for Hailey as she transitions into middle school next year.  We are so thankful for our friends & family who have been praying along side of us for what is best for her.

One final thought:

The day that we received the definitive diagnosis of Asperger’s for Hailey, Chris said exactly what I felt and exactly what I needed to hear from him as well.  He said “Julie, Hailey is still the same kid today as she was yesterday and every day before that.  This diagnosis does NOT change who she is.  She is still the same loving, silly, quirky, & remarkably intelligent girl she has always been.”

He is such a wise man!  I’m so glad that I’m walking this road with him.  He is right. Hailey has not changed because we got a diagnosis for her.  The diagnosis didn’t change her.  It allowed us to get the necessary help she needs.  It also has answered many of our questions that we had concerning some of her behaviors.  It has made us realize that we need to be more patient and more understanding as she navigates the world around her.

One thing that we know for sure is that this diagnosis does NOT define who she is. This is just another part of her story.

Thanks for walking this road with us!

JuJu

Not Only Awareness, but Understanding and Acceptance!

April is Autism Awareness Month.  I know our family & friends are completely aware of autism!  My personal goal is to educate enough people about autism in order to bring about more understanding and acceptance!  Autistic individuals are amazing and unique individuals.

Today is World Autism Day and we are wearing blue as we stand together with thousands of other families around the world that have a child or children with autism. We will also be “lighting it up blue” tonight.  Our porch lights have all been changed to blue lights.  I will be sharing a lot with all of you this month, but today I want to share 5 important things!

1)  Be aware!  The CDC just released their latest report last week that stated that 1 in 88 individuals in the United States have an Autism Spectrum Disorder (ASD). Those numbers are alarming, not only because it is up from 1 in 110, but also because these numbers are actually from data collected in 2008.  When Skylar was diagnosed in 2002, she was 1 in 160 kids diagnosed with autism.  Whether or not you believe that vaccines play a role, that there is an environmental factor, or that genetics factor into play, we should all be concerned by the rising prevalence of autism.  If you don’t know someone with autism now, I assure you, you will soon!

2)  Be Kind! There is a divide in the autism community!  Those that support Autism Speaks & those that hate them!  Those that believe vaccines cause autism & those that do not!  Whatever side you are on, the first thing that you should remember is that we all love our kids so very deeply that we would do anything & everything in our power to help them!  I have been deeply saddened at the name calling & the extreme judgement that I have seen within our community.  Common courtesy goes a LONG way ladies & gentlemen!

3)  Get involved!  Whether it be with an actual organization, participating in a walk, or helping a family you might know that has a child with autism.  I have been so deeply touched by our friends and family that have come along side of us to help with our fundraising efforts for Skylar’s bicycle!  You can read about our efforts here.

4)  Don’t judge!  This is a biggie!  If you are in the grocery store and you see a child having a meltdown, don’t assume they are misbehaving.  The stares and the comments like “if that were my kid I would just spank her” or “wow, what a terror” do NOT help.  The judgement HAS TO STOP!

5)  Ask questions!  If you have concerns about your child don’t be afraid to ask for help.  Ask for further testing and share your concerns.  Making a list of your concerns such as your child’s lack of language and social skills is a good place to start.  Early intervention is key!

As always I am happy to answer any questions you might have!  Make sure you check back here regularly as I will be doing several giveaways this month including a beautiful autism awareness bracelet from my mom and a set of flashcards from Goosie Cards.

Hey Girl!

I’m sure that many of you have seen the various “Hey Girl” memes about Ryan Gosling that have been floating around the internet for a long time.  A few months ago, Sunday over at Adventures in Extreme Parenthood developed her own Special Needs Ryan Gosling series.  When I first read them I was rolling on the floor laughing.  It is such a funny series & it was so funny to see her take issues that we as parents in the special needs community, deal with on a daily (sometimes hourly) basis and put a positive & EXTREMELY  humorous spin on it!  Those of you who know our family know that we try to deal with a lot of our difficult times with humor.

So this morning as I was surfing the internet, I came across a picture of Ryan Gosling.  I immediately knew what I wanted to do with it.  Sunday usually runs her series & invites others to link up on Friday, but that is when I do my No Filter Friday series.  So I’m going to share it today.  Hope it gives you a good laugh!

Be sure to check out Special Needs Ryan Gosling over on Sunday’s blog each Friday!  It is HILARIOUS!

Hope you are having a wonderful day!

Make it great!

JuJu

It’s All A Lie!

Hello friends!  It’s time for another installment of No Filter Friday.  This is the time that I love to share things that the girls have said or done that have left us red-faced, laughing, and sometimes speechless.  I have mainly shared stories of Skylar and her lack of filter here on my blog, but what many of you don’t know is that Hailey also lacks a filter, just to a lesser degree. In many ways it is refreshing how brutally honest the girls are, but it can be embarrassing.  If you are new to my blog or missed previous posts, you can click here for a complete list of No Filter Friday stories.

Today’s story is about Hailey.  For you to really enjoy this story I must give you some background.  Her class recently did a project call the Living History Museum. In this project the students picked a famous figure from history, wrote a research paper, and then presented a 1-2 minute speech about their figure in a Living History Museum.  It was a really cool project.  Hailey submitted her list of people for consideration and found out that she would be researching Davey Crockett.

When she came home from school with a packet of information about the history museum I realized that she would need to dress up as her character.  One day after school we were talking and I told her that I was going to order a coonskin cap for her to wear.  She quickly told me that she had learned the following:

-It was David Crockett NOT Davey.  He never went by Davey.

-He NEVER wore a coonskin cap.  He wore a brown felt hat.

-He wasn’t “King of the Wild Frontier”.  He was famous for serving in Congress and later fighting in the Battle of the Alamo.  All the stuff from the Disney show was fabricated after his death.

Wow!  I was totally surprised.  I had no idea.  I was impressed with how much she was learning about David Crockett.  Suffice it to say, I did NOT order a coonskin cap. She dressed up like an old-timey Congressman for her history museum.  I was so proud of all the work she did!  She gave her speech over 25 times to other students, parents, & visitors.

We recently made a trip to Disneyland and ventured into Frontierland.  I asked Hailey if she wanted to ride on the Davey Crockett Canoe Ride.  She said “ok” and so we got in line.  As we were waiting, the Disney cast member came by (in a coonskin cap) and asked the girls if they were “excited to ride in Davey Crockett’s canoe and to see the wild frontier he was the king of?”.  Hailey had the following conversation with the cast member.
Hailey:  Did you know that Davey Crockett NEVER wore a coonskin cap?
Disney guy: Sure he did!
Hailey:  No he didn’t!  He wore a brown felt hat.
Disney guy:  I think he wore a coonskin cap for a play once.
Hailey:  No he didn’t!! His name was David, NOT Davey! He was NEVER the “King of the Wild Frontier”.  He NEVER wore a coonskin cap AND he fought and died at the battle of the Alamo to help make Texas settlers free!
Disney guy (looking rather flustered): Wow! You’ve done your research haven’t you?
Hailey:  You see all this? (waving her arm around at the canoes and the “frontierland”)  This is all a lie!
At this point, Chris and I were rolling with laughter.  Hailey was as serious as could be!  The poor Disney guy couldn’t say anything else.  I’m pretty sure he had never had a 10 year old tell him his job hocking Davey Crockett to the public was a total farce .
But it doesn’t end there!  Oh wait…there’s more!  As we got onto the canoe we were seated in the back.  The only person behind us was another cast member who was responsible for the rear of the canoe.  As we were paddling along, the gal up front kept talking about the frontier.  When we were about half-way along on our journey, Hailey just blurted out:
-This is ridiculous!  What in the world is this teaching people about David Crockett?  NOTHING I tell you!  Absolutely nothing!
The cast member behind us was hysterically laughing!  Thankfully only the couple of people in front of us heard Hailey.  In fact, the younger girl directly in front of me said “I don’t think that girl likes this ride very much!”
When we got off the canoe Chris and I could barely keep it together.  It was truly one of the most AWESOME moments of “No Filter” EVER!  I immediately called my dad at work to share the story with him.  After he finished laughing he described the moment perfectly.  He said “That is CLASSIC!”
I hope you all have a wonderful weekend!
Make it great!
JuJu

Disneyland Day 3

Yesterday we spent time in both parks riding the rides we either missed or wanted to ride again.  We of course had to ride both Soarin’ Over California & Big Thunder Mountain Railroad again (and again!).  Those were definitely our 2 favorite rides of the trip.  Chris and the girls also rode California Screamin’ and had a blast!  Chris is in the very back of the coaster and you can see Hailey on the very right side of the picture.  Skylar was behind Hailey & I couldn’t see her from the pier.

Hailey begged for a turkey leg so Chris obliged.  It was almost bigger than her head! I laughed at how angry she looks!

Hailey had a couple of bites & then Skylar got ahold of it & she devoured the rest.

We made an impromptu trip to the beach to watch the sunset & let the girls run around.  It was super chilly with the wind coming off the water.  As soon as we got there Hailey saw the seagulls & took off after them.  The action shots tell it all.

I love that she stopped, flashed a smile, laughed, & then kept on running!

Oh to have even a quarter of her energy would be awesome!

It was so cold, but the girls loved running all over the beach.

After our trip to the beach we went back to the hotel.  Chris went out to grab some food because the food court in the hotel closed early.  While he was gone, Hailey went to blow her nose and came out of the bathroom and said the following:

I’d like to know what kind of tissues the Hilton uses!  They are TERRIBLE!  Also….the beds aren’t comfortable, the pillows sink in, the restaurants close too early AND our room is FREEZING!  Oh yeah, the channels on the TV are totally out of order!

I immediately started laughing as I thought her little rant was hilarious!  She gave me the most horrified look & then burst into tears!  I was shocked!  She then said “I can’t believe you are laughing at me mom!  I am SO upset!”

And that ladies & gentlemen is when you know that you have officially had “too much fun” and that it is time to head home.

Thank goodness we will be home this evening with good tissues, her own bed, pillows that don’t sink in, a thermostat we can control, & a TV with the channels in the order she knows and loves.  PHEW!

Have a great day!

JuJu

Disneyland Day 2

We spent Tuesday morning/afternoon at Disney’s California Adventure.  There was quite a bit of construction going on, but there was still a lot to do.  We actually split up immediately upon entering the park because Chris & Hailey wanted to ride the Tower of Terror & Skylar did NOT!  She has ridden it several times in the past but has decided that she will no longer ride it.

Loved this photo I snapped of them looking “terrified”!  Such sillies!

While they were riding that Skylar & I rode Soarin’ Over California…one of our faves! She squealed & laughed the entire time.  As we rounded the corner after that ride we ran smack dab into Handy Manny!  Skylar loves him!  She was by far the oldest kid waiting to see him, but I’ve learned not to worry about what others think.  I just want her to be happy.  I love the absolute joy that is radiating on her face!

Here is a photo of Hailey curled over on a bench following her ride on the Tower of Terror.  I kid you not when I say that she stayed like this for over 5 minutes.

Here she is once she came out of the fetal position!

Love this shot of my 3 favorite people with the cool ferris wheel in the background.

One of the rides that Skylar has talked about for days is the swings.  She loves them!  It is the one ride she insists on going on when we are at Navy Pier in Chicago.  Loved this shot of Chris & the girls waiting for the swings.

I also took a sequence of shots of Skylar swinging.

This next shot is my favorite…LOVE the angle.  I can already tell I’m going to want to enlarge this picture and add some text for our project life album.

After many hours of fun we headed back to the hotel to rest.  Skylar complained that her feet hurt pretty bad and she didn’t want to walk around the park again, so she and I went to see the movie John Carter at the theatre in Downtown Disney while Chris and Hailey went back and rode more rides in both California Adventure & Disneyland.  Both girls enjoyed their 1 on 1 time with each of us.

Today we will be riding the rides we have either missed or want to ride again.  Can’t wait to share our adventures with you tomorrow!

Make it a great!

JuJu

Disneyland Day 1

Hello from the Happiest Place on Earth!  We are so thrilled & blessed to be here. Just wanted to share some of our favorite pictures from yesterday.

The trees are beautiful and this is truly a magical place!  The girls were tickled to see Cruella de Vil first thing when we walked in the park. She is so MEAN! It cracked me up that Skylar told her so!

There are a LOT of people here! Since Skylar has autism, we were able to get a special needs access card to use during our stay. It allows us not to have to stand in all the long lines. It doesn’t always mean that we walk right onto the rides, but allows us an alternate entrance/waiting area. The cast members here at Disney have been so wonderful with both girls! I’ve had to fight back tears many times!

The best way for us to ensure a successful day (wherever we are) is to “go with the flow”.  Chris and I have both learned that with our girls we try not to have a set plan. Skylar usually has a plan in her mind & we just go with it!  Sometimes that means going back & forth all over the park & that is ok with us.  We want this experience to be a great one for all of us!  We spent 6-7 hours yesterday at the park then came back to the hotel for a nap.  After that we decided to head back to the park for some more fun! After a few more hours Skylar announced “I’m ready for bed”.  We knew that we needed to head back soon to avoid a meltdown.

Chris & the girls went on Splash Mountain. I opted out as I did not want to walk around the park all wet. Thanks to a great zoom lens I was able to snap this picture as they came down.  If you look closely, Hailey is in the very front, Skylar is in the pink hooded jacket, & Chris is in the last seat.  This has to be one of my favorites! Totally cracks me up!

You are NEVER too old for the carousel!

Love their sweet smiles!

Hailey thought it was awesome that on the Storybook Land ride they let her sit on the front of the boat to be the whale watcher.

We had a fabulous day and are looking forward to spending today at California Adventure!  I have quite a few funny stories to share.  The lack of filter with a huge crowd of people has been hilarious! And it’s not just Skylar! 😉 We laughed non-stop yesterday!  I’ll be back tomorrow to share our favorite shots from today’s adventures!

Make it a great one!

JuJu