Monthly Archives: January 2012

January 27, 2012

William Tell

By Bobbie

Last year we really wanted to make it to the special needs night at the Capital Theater but we couldn’t because it was right after Deeds burn.  This time we were ready to go and counted down the days!

We met daddy up in Salt Lake, all of us dressed up.  Even Magpie got a good brushing before we headed out.  When we arrived we were early so we had our pick of seats but with Magpie and us being unsure how Deeds would react to the music we sat in the back.  Ended up being a good choice since anytime there was clapping Deeds would complain about the sound.

To be honest it wasn’t exactly Deeds cup of tea.  I think he enjoyed the music as background noise but within minutes we had the iPad out to keep him calm.  Little sister on the other hand was in HEAVEN.  Who would think a 2 year old would love the symphony and opera so much.  She loved conducting the music and all the singing.  Magpie was fantastic and even got recognized from TV by a couple of employees that asked how she was doing.  We spoke to a few other families about her and she got a lot of love from the kids that were there.  By the time we got back out to the car she was worn out and thrilled to just lay down and relax.  She and Deeds both snored all the way home.

The best part of the evening was one of the last numbers.  I’ve heard the William Tell overture many times.  I think I’ve even preformed it before in some band.  In case you need a refresher here it is:

A little while into the song in the center of the Theater a young man stood up and started conducting the song, waving his arms haphazardly through the air.  His enthusiasm was contagious and soon the room was filled with flapping hands and dancing with yells of joy following.  All these amazing spirits that had done so well during the performances were able to really act out how the music was touching them.  As I looked around at them all I couldn’t help but let the tears just slide down my face.  Even Deeds was laughing at this point.  The conductor turned around at one point smiling and it was such a wonderful moment.  No dirty looks or scolding from those behind the revelers, just smiling and happiness.  It was truly heaven on earth.

The evening ended in pure joy.

A HUGE thank you to the Utah Symphony and Utah Opera.  We will be back next year!

4 comments   |  tags: , , , , , | posted in Autism, Epilepsy, In Public, Mild Cerebral palsy (CP), Quirks, Service Dog

January 23, 2012

Just a Bill – Utah Autism Insurance Reform Bill 2012

By Bobbie

Many of us have seen this or at least heard the song.  It means so much more to us right now than it typically does.  Utah is trying to follow the footsteps of 29 other states including Colorado, Arizona and Nevada that have enacted autism insurance reform laws.  Below is a summary of House Bill 69 (if you just want to know how to help please scroll down to the end of the post!):

House Bill 69 – Sponsored by State Representatives Ronda Rudd Menlove (R-Garland)

The bill would:

  • require providers of accident or health insurance policies to include coverage for the treatment of individuals with autism spectrum disorders
  • establish a $50,000 minimum annual benefit for Applied Behavior Analysis (ABA) therapy
  • require coverage to include:
    • ABA
    • pharmaceuticals
    • psychiatric treatment
    • psychological treatment
    • occupational therapy
    • speech therapy
    • medical treatment
  • The bill would apply to all accident and health insurance policies issued or renewed starting January 1, 2013

I believe a lot of people aren’t even aware of the fact that insurance doesn’t cover treatments for autism.  We pay our premiums, and yet our child is unable to utilize valuable services that will help him become a functioning (tax paying, voting) member of the community.  We have chosen to pay for some therapies out of our pocket but we are unable to afford a lot.  What we have been able to pay for has been amazing for him, just imagine how spectacular it could be if he was able to use these therapies full-time!    Why wouldn’t you want to cover proven effective services for children with autism now so they will be able to work later (and pay taxes and insurance premiums) as opposed to having them remain untreated because parent’s can’t afford to cover the cost and therefore remain in the system and disabled for their entire life.  It’s a no brainer to me.

Think this doesn’t mean anything to you because you don’t have a child with autism… think again.  I am in Deeds classroom on a weekly basis volunteering.  There are 6 teachers/aids in the class with only 12 kids with autism.  Including me that makes 7 adults.  When one child starts having behavior issues it will disrupt the entire class of 12 while multiple adults handle the situation.

What you should know is that many of the kids in that particular class will most likely be put in a mainstream classroom with your typical children once they are in elementary school.   Imagine one teacher, maybe with an aid, in a class of 30+ students.  What happens now when the child has behavior issues?  The entire class suffers, the teacher is stuck trying to do her best but the entire situation could be eased greatly if the child has had effective behavior therapies.

This is an issue that all Utahn’s should be concerned about, not just those touched daily by autism.  A fact you might not know is that in Utah 1 in 77 eight year old children has some form of autism.  You never know when it might be your child, your grandchild, or even a neighbor that will thank you one day for taking action now on this insurance bill.

I want to be able to do everything in my power to give Deeds EVERY chance in life.  This is something I want for him, and so many other families.  Autism, even higher functioning forms of it, is a heartbreaking struggle of ups and downs.  It adds a lot of stress, even for those of us with positive outlooks on life.  Battling insurance is  devastating.  Hearing of a spectacular behavior therapy that could help but then finding out your insurance will not even consider it and you can’t afford it will rip your heart out.

If your child needed a hearing aid, you’d get coverage.

Bi-polar?  Covered.

Schizophrenia? Covered.

Epilepsy? Covered.

Cerebral Palsy? Covered.

Autism?  Good luck mom…..

Lets end the insurance discrimination!  The government even sees it as a disability and yet we can’t help these amazing people reach their full potential.

Jeremy and I have decided to become advocates for the bill and will actually be spending time at capital hill this next few months helping to educate those that make the decisions.

UTAH, HOW CAN YOU HELP?

Go to www.autismvotes.com and register for updates.  While on the site you can look up your representatives and email them!  Let your leaders know you want action taken.  Share a quick paragraph about your story.

Got a cell phone?  You can also text “AVOTES” to 30644 to get updates and info.

YOU really can help us make a difference!  Lets be the 30th state to help those we love with autism!

OUR reason for supporting Utah HB 69!

11 comments   |  tags: , , , , , | posted in Autism, Law

January 20, 2012

Magpie Waits

By Bobbie

Magpie is such a smart girl.  The problem with this is that when Deeds leaves for school she mopes around because he is gone.  For a while I would play with her and let her snuggle next to me but then we started to see a subtle shifting of her bond to me from Deeds.  Little sister Gwen is so inlove with our other dog that she really dosent want anything to do with Magpie, which is actually a good thing so we don’t have to worry about them bonding too much while he is in school.  Now I’m back to just meeting her basic needs while he is gone.  Now so she is super, bouncing off the walls excited when he gets home. 

Yesterday the bus was quite a but later than normal dropping Deeds off from school.  Magpie sat curled up by the front door for a half an hour waiting for her boy.  Popping her head I’ll every time she heard a noise.  It was so adorable .

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I’m so amazed at their connection and how good she is for him.  We sure love our miracle Magpie!

Is he the yet?

Is he the yet?

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2 comments   |  tags: , , | posted in Magpie, Service Dog

January 18, 2012

Early Morning Video Game Play

By Jeremy

Bed time has always been an issue with JD. He will want me to lay next to him in bed until he falls asleep (which I do sometimes even though I shouldn’t), he will periodically come downstairs hopping or shuffling his feet, hang out at the top of the stairs or just go into our bathroom in the bedroom and play with band-aids. The last one is recent. He will also come into our room in the middle of the night a few times a week, and last night I pulled him in but saw that it was about 1:30 a.m. and decided to put him back in his room. He usually complains but not tonight he fell back asleep pretty much instantly.

I get up for work around 5:30 a.m. each day and I saw that his room was closed so I figured he was still asleep, but then I heard a laugh downstairs and he was playing his new video game Little Big Planet 2. I asked him how long he was playing and he would not answer, so when I asked him how many levels he had played he said three. Likely he was up since 5 a.m.

JD got the game after he earned a certain amount of tokens to go toward stickers when he behaved well. He just got the game on Monday and actually two nights ago — after another struggle of JD not wanting to sleep — around 1030 p.m. or so I happened to be watching television upstairs and realized that I forgot the cable for my phone and caught him switching out a movie from the Playstation 3 and putting in Little Big Planet 2.

We have allowed him to play the Playstation without us because when he turns on the Playstation it turns on the television and goes right to the game without him having to change the tv to the right channel. However, he would usually wake up around 7 a.m. and we were fine with that. This morning I told him that he needed to ask to play in the morning and not just walk downstairs and play, but he likely did not get it since he was engrossed in the game.

Looks like from here on out we will keep the games in our room or out of reach so he has to ask to get them in the morning.  I guess the positive of this is that Magpie was laying next to him on the floor.

1 comment | posted in Autism, Magpie, Service Dog

January 16, 2012

Happy Birthday Deeds!

By Bobbie

Deeds in the NICU

Four years ago our little man made his entrance into this world.  He was 5 weeks early but had to be delivered because of my heart.  I remember getting to see him for just a moment before they whisked him away and then not seeing him for hours until they finally let me go into the NICU.  All it took was that first touch to be completly smitten with him.  He is so endearing and has been touching peoples lives since them.  With all his challenges he is an exceptional little boy and he is an inspiration to me and his daddy.

We love you little man and know the years to come will be amazing for you.  Don’t let autism, epilepsy, PVL or the mild CP slow you down, you can do anything you set your mind to.  I know you will always find a way, even if it isn’t the way others think it has to be done.   We love seeing all the new and creative things your mind comes up with.

We had the birthday party on Saturday and it was an amazing hit.  Makes me feel better about spending the time to make the cake and stuff.  To say Deeds loved all the angry birds stuff would be a gross under exaggeration.  Thanks so much to those who came.  He had a rough morning with meltdowns but once we were at the party he did fantastic!!  Enjoy all the pictures.

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3 comments   |  tags: , , , | posted in Food, Fun

January 13, 2012

Angry Birds Birthday Cake

By Bobbie

I have never worked with fondant before but since most of the cakes I saw online with Angry Birds that looked good were decorated with it so I decided to give it a shot.

I made a practice cake that was small just to test out my fondant skills.  It was a disaster.  I didn’t decorate it…I just wanted to see if I could actually roll it out.  They always make it look so easy on TV!

I found a better marshmallow fondant recipe and more supportive cake recipe and decided to try again.  The baked cakes turned out perfect and the icing and filling was a breeze.  I was feeling so confidant.  I made the fondant and kneeded in all the colors I would need to decorate the cake.  I had read a tip to wear gloves during this part and I’m sure glad I did.  What a mess.  Soon I had all my beautiful little balls of wrapped up fondant all ready to go.

I started to decorate the cake and was feeling pretty smug untill I actually had to roll out the fondant.  Sadly my fondant ended up being a bit dry but at least now I know and can fix it before hand next time…. if I ever decided there is a next time.  Lucky for me most of the cake would end up covered with decorations anyway.  After 4 hours of decorating and making a complete disaster in my kitchen I finished Deeds birthday cake.  It is now sitting in a box so he can’t see it before his party.  I realize now I forgot to give all the poor pigs eyebrows but hey, they laugh all mean when you don’t get them in the game so maybe this is pay back.

I got inspiration for a lot of the ideas for the cake from one I had seen online but couldn’t trace find out who actually did it and only had one small picture to go by.  I had to add a couple of things that I knew Deeds would ask about.  The helmet piggie is one of his favorite and also the black bird.

Can you tell what it is yet?

All in all I’m so glad it’s all done and ready for his party.  I never thought it would turn out so cute.  Sure was a lot of work especially compared to the easy peezy ninja turtle from last year!  Heaven help me, I think I’ve set the bar too high for future birthdays with this cake.

5 comments | posted in Food

January 12, 2012

Wedding Cake Anyone?

By Bobbie

While making the cake batter for Deeds birthday party I decided to try out a new recipe.  What I should have realized while mixing it and it was filling up the entire bowl is that I was making WAY too much.  Apparently I made the “wedding cake” recipe so we had a ton left over.

We decided to not only make cupcakes but let the kids play with coloring in the batter of each cupcake.  Deeds thought it was the best thing ever.  I would dip a toothpick into the coloring and then he would circle it around the cupcake.  I never thought it would be so much fun.  He tested every sample color I got to make his fondant for the cake.

Gwen mixing the pink. Her favorite color.

Little baking artists

Before baking

After Baking

When all was said and done we made some Nutella butter-cream icing for the top and they were so yummy.  My mistake allowed us to taste the cake before serving it to everyone at his party.  It was fun to bite into them and have the middles be the bright vibrant colors!

Had so much fun!

1 comment | posted in Food

January 11, 2012

Nightmares

By Bobbie

The past couple of weeks I find myself being woken up with fear gripping every bit of me.  At first when I would waken I couldn’t remember what would have me so terrified but the past few times it’s become more clear.

I’m having nightmares about Deeds burn.

It’s been almost exactly a year since it happened and while the nightmares are exaggerating it and adding new terrifying elements I’m realizing now how hard it was as a mother to have him go through that and have to watch him be in so much pain and subject him to the cleanings.

For those of you that might not know what I’m talking about here is a short version of the story.

On Deeds 3rd birthday he hadn’t eaten much so when he asked for some maccaroni and cheese Jeremy willingly went upstairs with him to make some.  A short while later I heard Jeremy frantically yelling for me.  I went upstairs and saw Deeds screaming with hot water and maccaroni noodles everywhere.

He was standing next to his dad watching the food cook.  When Jeremy told him it was time to go sit down Deeds shirt caught the spoon on the pot and it pulled the entire contents of boiling water and noodles onto his head.

We rushed him into the bathroom and started using room temp water to ease the skin (thank goodness for that first aid course) but we got to his face and hands last since his abdomen and legs looked the worse at first.  A long night at two hospitals involving an emergency ambulance transfer later our little guy ended up at the burn unit at the University of Utah.  He woke up a few days later at home screaming with his eyes swollen shut.  We had chosen to have him discharged when the doctors explained that with his special needs and resistance to the unfamiliar that he might heal better at home.  If only we had known how bad the next couple days would be.  Granted they were right, he was NOT sleeping or eating anything at the hospital, but the stress it put on Jeremy and I to take care of him has obviously taken its toll on me, even a year later.  It was then and literally is now one of our worst nightmares.

With the burn we would have to pin him down two times a day and practically scrub the wounded areas.  I pray to never hear my son screaming like that again… and we had to do it twice a day for weeks.  It was horrifying when a full week after the burn we went to buzz his hair to make the cleaning easier and found an entire area of his scalp that hadn’t been treated that was burnt (and still doesn’t grow hair the same because of scar tissue).   We were all covered in bruises and emotionally battered by the time things started to heal but it was all worth it when Deeds has healed so well thanks to the cleanings.

Here are a few before and after shots.  The first two of the burn were from when his eyes were swollen shut before he could really open them again.

The healing really is amazing considering how bad it was.  You would never know.  Sometimes when he gets upset he will get bright red on only the side of his face that was burnt but we have been diligent about keeping the fresh skin out of the sun this past year.  I look at him often and think about what a miracle he is.  In so many ways we are blessed to see miracles happen when we feel like we have hit bottom.

I don’t know why I am all of a sudden having these nightmares.  I guess it is to serve as a reminder to me as we approach the first anniversary of his burn that even the most cautious parents have bad things happen.  The handle was turned, daddy was standing next to him…bad things still happened.

As a mother I wish I could have taken away all his pain.  I wish he hadn’t had to go through that.  While he still mentions it from time to time I pray it doesn’t haunt him like it does me.

Hopefully these nightmares will pass, I’m hoping that getting all this off my chest will help them to go away.

Love your babies.  Hug them if they will let you.  ALWAYS tell them you love them.  They grow so fast and it’s the good memories you hope they take with them.  Long after I’m gone I hope Deeds doesn’t look back and remember the pain from us taking care of him.  I hope he remembers all the things we did that made him happy.  I hope he remembers how much I love him.  How much his daddy and I strive daily to help him grow and reach his full potential.  How much he means to us.  I guess that’s why I’m trying to make sure his Angry Birds birthday is a wonderful one.  It will be good replace the memory of last year’s birthday, if not for him…. than for his dad and I.

We love you Jacob Diedrich.  You will always be our miracle boy.

 

 

4 comments | posted in Burn, Life

January 9, 2012

Deeds loves crafts

By Bobbie

Deeds helped me make some gifts for his teachers and he had a blast.  They didn’t turn out perfect, lots of bumps and air bubbles but he put a lot of love into them.  Deeds helped pick out the papers, spread the glue, and pick the stickers.  He had a lot of fun, and I learned too let go and not sweat the small stuff.  I wouldn’t have thought he would have so much fun.  I’m glad I did them while he was awake so he could help.

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This last week I also made these for his bedroom wall.

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His grandma plans on making him a quilt for his birthday next week that matches the letters.  He will just love the sock monkeys.  Best part is that I found the wood letters on sale for only a dollar each and the scrap book paper was only $0.25.  They turned out amazing.

School has been going well for Deeds.  We are so happy he’s back in classes.  This past week when I went into volunteer I actually saw him pretending with some playdough and a stick that it was a birthday cake and a candle.  I got a little choked up.  While this may not mean much to some , to us it was a big deal to actually see him imagining and pretending for the first time.  He has scripted before but never actually made up his own imaginary play all by himself that we have ever seen.

He’s making so many improvements and we can’t wait what to see what this means for his future.  So many amazing blessings.

Poor Magpie still stays home wile Deeds is at school  and I can tell she misses him very much.  She is always waiting by the door for him when he comes home.

3 comments | posted in Autism, School

January 4, 2012

Time to Party

By Bobbie

The stockings are down, and things are getting all cleaned up.  Deeds is back in school and it’s time to start planning….

DEEDS BIRTHDAY PARTY!

Can you guess what he wants his cake to be?  We are excited and planning to make this year a much better birthday for Deeds than last year was.

 

2 comments | posted in Burn

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