Wednesday, February 29, 2012

How To Make Autism Awareness Pins

With Autism Awareness Day coming closer, I'm going to show you how to make a simple pin to distribute to everyone!!  (If you don't already know how.)

If someone notices my pin or makes a comment, I reach into my bag to give them one and tell them it is for autism.  They are more than happy to put it on asap!  Here are the directions.

#1. Buy some pin backs at your local craft store.  I use the 3/4 pin size.  They come in gold or silver.







#2.  Go to your local $ store and purchase random puzzles.  Preferably with small pieces. 







#3.  Of course you need glue!!  While you are at the craft store, pick some up. 







#4.  Before you know it, you have your very own Autism Awareness Pin!!  Yay!  You did it! 







Now wear it and be proud.  If you see me, I'll be happy to give you one!  Any questions, please leave under comments or e-mail me at grapejellyonpizza@gmail.com

Kreativ Blogger Award Goes To.....

Kreativ Blogger Award

I'm an award winner....WOW!

Rules of acceptance are:

1-  Thank the blogger who presented you with the award.
Thank you so much Bacon and Juice Boxes for this Kreativ Blogger Award.  I had no idea this was even out there!  Imagine starting out the day with Bacon and Juice Boxes with Grape Jelly on Pizza.  The thought is making me very hungry right now.  Thanks for the new friendship.

2-  Post a photo of the award.

3-  Share 10 things about yourself that your readers don't know.

1. Love springtime and watching flowers bloom.
2. My idea of exercising is walking the dog and chasing after the kids.
3. I know every single word to the movie Beetlejuice.
4. I'm a loyal friend.
5. I am 40 years old but feel much younger.
6. If my son really wants to go to a store and I don't, I tell him it's closed.
7. I'm addicted to Facebook.
8. I drink wine every night.
9. I was born with blond hair.  After kids it turned darker.  Tried to dye my hair brown but it turned out red so I'm letting it all grow out and never dying it again!  Even if I get some greys.
10. I hide chocolate from the kids and eat it when they are at school.

4-  Choose 6 people to present the award to.

The following bloggers and I have 1 thing in common; they have at least 1 child on the spectrum.

1. First and foremost my dear friend HomeStyle Mama (with a side of Autism) deserves this award.  She is funny, sweet, straight to the point, no holding her back and I love that I can talk to her with ease.  She is a down to earth Mama!  Her Facebook page has the same name HomeStyle Mama (with a side of Autism).

2. From the Facebook page We Care About Someone With Autism, my friend's blog is My Family's Experience with Autism.   She also guest blogs for many, many others and is currently working on potty training her son.  She one busy woman!

3.  The next award goes to "Mommy Buddy" from the planet Autism.  We get to hear about her adventures with her 3 children everyday on her Facebook page with the same name "Mommy Buddy" from the planet Autism and added bonus, her husband has a page also called Dad Does it Different

4.  When you are looking for new recipes, please make sure you stop by Lemon Drop.  Linda creates masterpieces with her baking.  Gluten free recipes are a must with her.  When she posts new recipes I swear I can smell them!  She is also on Pinterest.

5.  Autism Wonderland is an amazing blog.  She has worked so hard on it and it's jammed with information and wonderful stories.  She also has a Facebook page with the same name, Autism Wonderland

6.  Last but certainly not least is Our Life in Pieces.  Melissa shares stories about her handsome little man.  Along with her husband, she wrote a song called Pieces to promote autism awareness.  Please like her Facebook page with the same name, Our Life in Pieces

There are so many more blogs I would like to list!  I'll save that for another day. 

Tuesday, February 28, 2012

Last Will & Testament

It took 8 years in the making but it was finally done today.  Yes, we signed the papers for our Last Will & Testament.  Talk about nervous.  Was I tempting fate by not signing or did I just tempt her by signing?  Anyway, it is done, signed and sealed.  Why did it take 8 whole years to do this you ask? 

Thinking about death has always scared me.  So many questions would come up.  Did I want to be buried or cremated?  Who would get what?  Who would take the pets? When you're single that seemed like a big deal.  Then I got married and had children.  An even bigger deal.  Then my oldest was diagnosed with autism.  Now it was the biggest deal ever. 

The movie Beaches with Bette Midler would make me cry all the time at the end.  It was a touching story of best friends, one with a daughter, who passed away.  At the end of the movie the little girl packed up a suitcase and her cat then was driven away in a limousine to live with her mom's best friend.  Touching.  Not a reality when you have a child on the spectrum.  My son would not understand if his entire life was uprooted, therapies stopped, new school, new parents, the list goes on and on.  Made me sick every time I thought about it. 

It was on the top of our list every new year and then it would fizzle away after a while.  I can not tell you how many times we had the same discussion and it always ended with my husband and me parting ways in the house.  Outside of the obvious, my son has so much more to deal with.  He wouldn't be able to move far away.  He not only has a regular pediatrician but a developmental pediatrician, a psychologist, services all over the place with reports that can numb your mind if you don't deal with it on a daily basis.  Besides he's not like our daughter.  She will grow up, go to college and start her own life.  It's different for my son.  You know what I'm talking about. 

Turns out it really took us 8 years to come to an agreement on who the couple should be to take over for us when we are gone.  It actually turned out to be a quick decision on both of our parts when I brought up their name.  They have full knowledge of autism and when I need advice it's their number I call.  It was funny in a way.  I was so nervous asking. It felt like I was in high school again, asking someone out.  If they would've said no, I don't know what we would've done.  Another 8 years would go by perhaps?

Knowing that this was signed and sealed today, I can take a big sigh of relief.  Don't get me wrong....we don't want to die but if something did happen to both of us; I know my kids will be taken care of and my son with autism will continue to get all his services without a hitch. 

Do you have it in writing?

Tuesday, February 21, 2012

Our Therapies. Past-Present-Future

Autism is a difficult diagnosis.  What can make it even more difficult is all the different types of therapies that are out there.  If you have met one child with autism you have met one child with autism.  Each child is so different and what works for one may not work for another.  I have been asked what we do for my son and here's what I've come up with.  A past, present and future list.  Things we have tried in the past I am willing to revisit in the future and everything here is always up for tweaking! 

What we tried.

Karate - We started him when he was 4 and was so overwhelmed by all the mirrors and loud music that after 5 months of fighting with him to go...because I heard you have to keep pushing, he'll eventually like it...I gave up.  It was way to difficult for the both of us.

Swim - He was in a program when he was 4 and after 8 sessions decided there was no way in h*** he was getting back into that pool.  All of the sudden.  We had no idea what happened.

In Home Music Therapy - He showed an interest in music so we thought this was a no brainer.  He didn't like it when the therapist came into the home.  It got to the point where she would be walking around after him, playing a guitar and he would be ducking and weaving all over the house.  He only cooperated when she would ask for help to put the guitar away.  Smart kid.  No more guitar = bye, bye lady.

Gluten Free Diet - For about 1 weekend.  I was so excited and went to Wegmans to purchase the gluten free food.  He had so many behaviors due to the fact we were changing all his food and he didn't like the taste at all.  So we decided not to do it.

The Little Gym - I took him when he was little and we had no idea he had autism.  I noticed he never listened, went to a different part of the gym away from all the other kids.  He had a fascination with light switches.  He would constantly turn the lights on and off and on and off.  The instructors tried to ignore it first but then all the other little ones thought it was great so they joined in.  Needless to say, no more little gym after 2 semesters. 

This is what we do now.

School - He has more good days then bad.  We do push for inclusion and he gets speech, occupational therapy and is in a social group.  Like everyone school can be fun or a drag. 

After School Socialization Program - Couldn't ask for a better program for my son.  This one tops the charts for his behaviors, socialization and speech. He has been in this program for 3 years now and I highly recommend it to all my local friends.  He goes for 5 hours a week and asks to go see 'his boys'. 

Speech Therapy - He has been going to a speech therapist since he was 3 and will continue to go for as long as insurance will pay for it!! 

Occupational Therapy - This is back to back with speech therapy.  For a few years they did speech and OT at the same time but now they are separate.  New for this year, we are getting away from handwriting because it seems to be painful for him and is now learning keyboarding.  He seems to enjoy it.

Loves the Pool
DIR Therapy (Floor time) - We had a few sessions when he was 6 and actively use it all the time. 

Swim Therapy - He didn't like the pool when he was little but this time he has a one on one instructor and it is in the Good Shepherd therapy pool.  His instructor has experience with autistic children and is real patient but firm with him.  He seemed to have bonded well with her and now he jumps off the side and goes into the deepest part of the pool.  He can also swim the length of the pool.

What we'd like to do.

Music with Voice Only - Is there a person out there who would work with voice only?  He does much better going to places out of the home for instruction.  This would be ideal.

Sports - Some sort of sports would be nice.  I'm not talking full contact sport because I think he'd run away from it but maybe cross country, baseball or soccer. 

Computer Camp - A place to go where he could learn to possibly design a game?  Of course when he is older but he loves to play the games so much I know he could do it.

Cooking Program - He loves to cook.  He loves to go to the grocery store and pick out food.  He takes his time and checks out all the different types of pasta, breads, fish, etc.  Sorta like Ratatouille from Disney Pixar. 

What about you?  What seems to be working for your child and what would you want to try in the future for your child?

Wednesday, February 15, 2012

Somewhere on the Spectrum. Written by Jennifer Ruschman

Somewhere on the Spectrum

Our Path to a Diagnosis

It was not a simple path to his diagnosis.  Realizing there was a problem was tough.  Knowing where to start was hard and dealing with the fact that your child will have autism his entire life was horrible. I haven't heard one story that was cut and dry yet about getting a diagnosis.  Here is our story.

My son was born at 13:13 on January 7th.  (13 happens to be a lucky number for me.)  It seemed like everyone was there to welcome in the first born grandson from both sides.  It was a happy occasion.  We had many visitors for months to come.  He was a squirmy little guy with a big smile.  He didn't like to stay still, ever.  He slept his first few months in a moving swing every night.  If that swing stopped, he cried, so I always had 4 size D batteries ready to pop in.  He was a good eater.  Loved all types of foods introduced to him except for peas.  Don't blame him on that one actually.  He was hitting all of his milestones and his gross motor skills were off the charts.  He was climbing stairs before he could walk.  Everything seemed normal.

We didn't want to wait so we had another baby.  My daughter and son are 17 months apart.  Oh, how our lives changed when there were two.  Lack of sleep because my son still wasn't a good sleeper and now a newborn.  They would both be up every three hours and not at the same time.  There were days that were just a blur.

A friend of mine had a son who was five months younger than B.  She would bring T over to play often.  That's when I started to notice differences between the boys.  T would talk to her, point at things, make eye contact, play appropriately with toys; the list went on and on.  Now, I'm not big on comparing but it couldn't be helped.  Why was B so much different than T?  At night I would tell my husband about all the differences and would end up crying at the dinner table.  After a while he didn't want my friend to come over anymore because of how upset I would get. 

Confirmation bias is a tendency for people to favor information that confirms their preconceptions or hypotheses regardless of whether the information is true. 

When we were alone he was fine.  We were fine.  It didn't matter that he couldn't talk.  Kids throw fits.  We could justify anything.  We were good at explaining what was happening or not happening away.  Confirmation bias. 

Finally we heard the word autism.  Two family members stepped forward at two different times to express their concerns.  Unfortunately, they left it up to me to relay the information to my husband.  It is sorta like when people keep asking the girl, "When are you going to get engaged?"......go to the guy to find out.  It puts her in a bad spot.

At my son's wellness visit at 2+ we asked if he could have autism. While I was holding my son on my lap, the pediatrician said his name.  My son looked up at the doctor and the doctor told us, "No.  He doesn't have autism.  If he did, he wouldn't have looked at me."  OK.  Again, confirmation bias.  A doctor confirmed it, he didn't have it.  Sounded good.  Everyone else is crazy.  Instead he wrote a prescription out for a speech therapist.  This we would do.

After the intake and he started therapy, his speech therapist suggested he had developmental delay.  OK.  No 'autism' word.  We kept with the speech therapy.  In the meantime I had contacted the county to get started on getting him evaluated for speech delay and developmental delay.  Not autism.  The papers were received in the mail, completed and re mailed that same day.  I knew he needed help.  I waited and finally got the appointment call. 

June 2007
So we went and of course he qualified for services.  The report brought me to tears.  I HATE reading those reports.  Still do.  Then I get a call from someone saying she was his teacher.  I was like, what?  Turns out he qualified for 1/2 days, 4x a week and he could ride the bus.  He started when he was just 3.  I had never been away from him with the exception of having my daughter.  It was tough.  Then a few months went by and I received a flier in his backpack advertising an Autism Awareness day at Sesame Place.  Autism?  He doesn't have autism.  Speech and developmental delay yes but not autism.  I called the teacher to see if it was a mistake and she said, oh, I must have put it in his backpack by accident.  See, every professional we had dealt with up to this point had never used the autism word.  Since then we found out why.  If a professional says 'autism' to you and you don't have insurance, then they are responsible to pay for your services.  Didn't know that did you? 

I also started going to a parent support group through the IU and after the second time a mom told me the truth......speech delay & developmental delay = autism.  We now had to find a developmental pediatrician to get an official diagnosis then start with medical assistance.  My head was spinning and I went into depression.  I swear I lost days, weeks and months.  Feeling completely numb and truly alone in my quest to get help.  I tried my best not to show the stress.  Like I was in control but I was falling apart.

Eventually, we went in to see the developmental pediatrician.  We walked out with an official diagnosis of autism.  For the first time I had a smile on my face.  I knew what it was, it had a name and I was going to do everything in my power to help my son.  Nothing was going to stop me and nothing has.  We are a strong family unit out to do whatever it takes to not only help our son but to help others.  We are not alone.  You are not alone.  We are all here for each other.  We need to continue to reach out to others. 

A new friend of mine said it on her page yesterday.  She wrote on Afton's Army  Keep Going! Diagnosis isn't the end of the world...just a detour for a different path. You can do this. ♥ 

I want to hear your story.  If you would like to share your story, please submit it to grapejellyonpizza@gmail.com.

Tuesday, February 7, 2012

Our Day Off

Cough, cough. "I sick. No school bus mom." In all fairness, he did sound awful and I didn't want a repeat of November complete with emergency room visit at 4am, so he stayed home. My disclaimer was this, "If you stay home, you are going to rest all day on the couch and watch TV."   "OK mom." By 10am he was bouncing off the walls. My threats went like this, "If you don't get back on that couch. I'm driving you to school right now!" Off to the couch he went. For about 1 minute. He beat me. He got to stay home.  After lunch, which consisted of 2 BBQ sandwiches, pasta salad and a giant brownie with icing, he went to the dining room table with a box of tissues.

Left on the table from the night before was a pen, plain paper and random crayons.  He put the tissue box down and started talking to it.  Soon he had pen in hand and started to draw on the box.  "Please do not write on the tissue box," I said.  He kept doing it so I sat down and watched in silence at the end of the table.  If you interfere, he stops.  I learned that lesson. 

He starts laughing and runs to the kitchen.  He returns with blue painters tape.  Now FYI to all parents, I always have this tape on hand.  It is the absolute best tape if your kids enjoy decorating.  We tape artwork all over the walls, doors and windows.  He starts taping items to the box and shows me a happy face.  "Good" I say.  He continues his work talking all the time.

He starts laughing again and takes off for the kitchen, this time bringing back a pair of safety scissors.  He loves cutting...hair, shirts, and custom made blinds for the living room that cost over $500 to replace and that was with a 70% discount.  He starts cutting the tissue box's 'hair'.  It's sort of like a private joke sometimes with him because he is the only one who knows what he is laughing about. 

Now, the 'hair cut' is over and he starts to cut up the box.  Soon there is no more box left, just a bunch of cut pieces all over the table and he goes back into the living room to be with his angry birds.  I start to clean up the mess.

Sad and Happy
The two faces on the tissue box.
As I gather up the small pieces I see one that has the word sad on it then another that has the word happy.  I show him the pieces and ask if he wrote that.  He says yes.  He says yes to anything you ask him so that was silly on my part.  We go pick up his sister at school and when we get home I ask her if she happen to write on the grey tissue box yesterday and show her the words.  She tells me she did not write anything on the tissue box.

Could it be?  A child, when left to play and be creative on his own, wrote out sad and happy without any prompting or modeling?  YES.  There weren't any books on the table, he didn't ask me how to spell those words, he just did it.  That's my boy. 

Thursday, February 2, 2012

SCRABBLE

The stage was set. My daughter picked out her new favorite board game, SCRABBLE. She was determined to play and have all of us play with her, even her brother. It is one of his goals so why not? We chose to go down into the playroom where he had his stuffed animals and 6' round crash pad available if he needed them. We all sat on the floor and set up the game.  SCRABBLE got his attention right away because of all the little tiles with letters on them. Oh, how many there are!  I could tell he wanted to scoop them up and smash them onto the floor.  He went ahead and picked his tiles out then left.  My daughter started.  G R E W, good word. We all took a turn then it was his.

"Come on over and play."  

"No."

OK, we'll try again next time. As we played he would take some breaks from his crash pad and look at the letters. We asked if he wanted to make a word. No. He takes off again. He comes back over, locked knees rocking back and forth, grabbing and twisting his hair while looking at his letters and says no and leaves again. I look at his tiles and find an N and an O and place them on the floor. He comes over, points to the letters and says, "No."  Got it. He was telling us a word all the time...NO. I added it to the board. Success.

Wednesday, February 1, 2012

Passion or Obsession?

I am currently reading a book by William Stillman, Demystifying the Autistic Experience and in Chapter 3 he asks the parent or caregiver to distinguish the person's passions from obsessions or compulsions.  He goes on to explain why but before I even get to the explanation, I am having trouble figuring it out. 

My son loves video games but once he has conquered a game, he is completely done with it.  He hasn't played Wii for a while.  Game Stop loves to see us.  Even Santa brought a 3DS for Christmas but he is over it already.  It is end of January. 

My son enjoys music but there are times when he has no interest and demands the radio be turned off.  He especially wanted the radio on in the car during December because of all the Christmas music.  He loves holidays but I think of that as a temporary obsession. 

My Little Chef
He enjoys cooking but even that has fizzled.  He would rather 'mad mix' instead.  Obsessively pour liquid from one cup to another while making a huge mess.  Oh, and freezing random items.  You never know what is in my freezer.

He enjoys water.  He loves taking baths and swimming. We get him into a pool whenever we can but he doesn't continually ask for it. 

I think he wants to learn how to read but if we sit down with him and get a book out he will run out of the room.  He prefers to page through the book by himself. 

He loves to smash things.  Is this a passion?  We call him the destroyer.  He loves to take small toys into the basement, stand on the couch arm and throw them all onto the tile floor and watch them smash into a million pieces.  Toys, crayons, ice cubes basically anything that can be destroyed. 

He enjoys train rides but hasn't asked to go in over a year.  Other children love Thomas but he doesn't show any interest.  Speaking of Thomas, he doesn't show any interest in cartoons anymore.  He watched the cartoon Star Wars for a while but demands it to be turned off if it happens to come on.  Movies?  That is a new one but not any particular one at the moment.  I think he loves eating the popcorn and drinking the blue slush at the theater the most.

I guess what I'm tying to figure out is my son. This simple task of trying to find out his passion has really thrown me for a loop. I understand his obsessions and  compulsions but I simply do not know what his passion is.  Is it possible he hasn't discovered one yet or we just haven't noticed?  Yes.  Bad parenting?  Possibly.  I'll let you know when I figure out what his passion is.  Until then, I'll keep searching.