Wednesday, December 31, 2014

The Most Perfect Sound in the World

He is off to the left in front of the
microphone.
There he stood.  On the stage with a giant spotlight on him.  He stood with pride in front of his entire 5th grade class overlooking a packed auditorium.  The music started.  Waiting patiently for his cue to sing.  Then it was time.  It was his turn to shine.  A voice so beautiful filled the room.  His falsetto was breathtaking and his pitch was perfect.  I couldn't help my quivering chin.  My eyes filled with tears without warning.  Proud doesn't even begin to describe this moment in time. 

His music teacher told us he could sing.  He wouldn't sing for us. 

His autistic support teacher told us he had a beautiful voice.  He wouldn't practice for us. 

We put our faith in their hands that he could do it.  They said he could.  He did. 

He was diagnosed with autism at the age of 4 but we knew earlier.  He was non verbal for many years then slowly words came.  Scripting was and still is huge.  Verbal stims are everyday.  It is what we are used to and it makes him feel good.  We don't stop them.  We usually hear singing through his scripting and even then it is sprinkled with funny voices and stims thrown in.  But on this glorious night we heard an angelic voice fill the auditorium and it was the most perfect sound in the world. 

Singing his solo in front of a packed auditorium. 






Thursday, October 16, 2014

Art Room Paintings

We moved into our new home over 2 years ago and we had an extra room, an extra bedroom that is.  We don't get overnight guests so with some thought, my daughter and I decided on an arts and crafts room.  I wanted to scrapbook and she wanted to everything else Michael's and AC Moore had to offer.  Lol.  BUT I wanted this space to be for everyone so a bit more planning went into it. 

With my son's permission, all of his LEGO's and K'nects were organized and placed into a part of the room, then daughter decided she wanted LEGO's also so she has a section for hers as well.  I changed the closet into all craft storage filled with tons of labeled photo boxes and made a table.  Yes, I made a big art table made out of a door.  It gives us lots of space and overall it is working for us.  All my scrapbooking things are there but still untouched.  I'll get to it. 

While watching a TV show, The Real Housewives of Beverly Hills, (I watch it because of the drama....don't judge me) one of the women had shown a painting mural in her home.  It was a bunch of small canvas paintings her family and friends had painted over time and I really loved how it looked.  So I thought we could give it a try. Packed up the kids and off to Michael's we went for supplies. 

Side note.  Now, one of my favorite facebook pages is Autism Art Project.  That page is filled with beautiful artwork from the creator, Beth and sprinkled with artwork from her son.  She also shares her adventures into their world of autism.  It's one of the pages I do read often.  If you haven't checked them out, you won't be sorry.  She is an amazing artist.  

My family decided that once a season we would all gather in the art room and paint together.  The first time my son didn't really like it.  He took black paint and angrily painted 2 eyes and a mouth then yelled and stormed out.  We all remained calm and kept painting.  Eventually he came back into the room and asked to paint another picture, this time of a red flower.  He got another canvas and it came out beautifully!!! 

So, I am presenting our little family project representing spring, summer and fall of 2014. I'm hoping to eventually cover the entire wall with our work. 

Spring, Summer and Fall of 2014

Thursday, October 2, 2014

Friendship and Drums

UPS came to my house yesterday and delivered a surprise package for my son.  A snare drum.  A very loud, very awesome snare drum. 

Last week I  told you about his music teacher who did his own research about autism and decided on an out of the box way to teach my son.  This technique was going to be used for a while until the teacher thought he could handle learning how to read sheet music.  Being a black and white thinker, my son decided he couldn't practice unless he had his very own snare drum.  Tricky little guy. 

I received a call from my dear friend and her hubby who live out of town and they wanted to give my son a drum.  Do you have a friend who you've known your entire life that even when you don't talk often it's like you pick up where you've left off without any hesitation?  That type of friend. 

So excited to see what was inside!

Her hubby was a drummer for many, many years and wanted to pass on one of his.  Floored at the generosity, I accepted but didn't tell my son. 

As we were waiting for the drum, he had another lesson.  This week his teacher decided to introduce him to actual sheet music because he nailed the previous weeks lesson work. Without practicing.  Yes, I'm bragging. 

Back to the drum.  He opened the box and was so excited!  My drum!  I have a drum!!  Thank you! Thank you!  He ran up the steps and brought down his sheet music and sticks and started drumming.  Drummed all night long. 

Drumming away.

Dear friend and hubby, thank you so much for the snare drum and thank you very much for the earplugs.  They help.  How come I didn't realize how LOUD drums were?  LOL.



Tuesday, September 23, 2014

Musically Inclined

Music!! 

Music seems to be 'his thing' so far this year and we couldn't be happier.  In July he told us he wanted to play drums.  Thinking it may be a phase, I didn't pursue lessons.  We signed his sister up at the end of the last school year for Viola lessons and in July is when we went to rent her instrument.  He loved the smell of the old music store, the creaking of the wooden floor and was immediately drawn to all the instruments and music books.  That's when he started insisting on drum lessons. 

When school started his teacher asked if I'd think he'd be interested in joining Chorus.  We decided to give it a shot and he was fantastic!  The Chorus teacher asked if he could sing a solo at the Winter Concert because his voice was beautiful.  Awesome right?  What is funny about that is we hear tons of verbal stimming and not so much singing.  Verbal stims rank high in this house but apparently this boy can sing and can hold a tune.  Didn't get that from me.  LOL.

During parent teacher night we met with the Music Teacher and told her about his interest in drum lessons.  Because the school year already started and percussion lessons were already filled for the year our other option was to find him a private instructor.  Now, in our household, we were pretty much filled with after school obligations.  Like so many other autism families, he has therapies after school.  We have tried many over the years but currently he goes to an after school therapeutic socialization group, also swim, speech and occupational therapy weekly.  Not to mention his sister's activities.  So to fit in drum lessons? That was going to be tough.

His wonderful Music Teacher gave us a place where we could check out for lessons.  Over the phone I asked if this instructor had any experience with teaching children on the spectrum.  Guess what they said?  No.  My first feeling was 'then they can't teach my son' but I made an appointment to see if the instructor and my boy would mesh.  He really wanted to learn how to drum.

We went to meet the instructor and he was very open to learning how to teach my son.  We spoke about his learning techniques, interests and most importantly, the instructor let my son go to town on a drum set.  Interested in what he was hearing, we decided to move ahead with lessons.  Just so happened that the day and time slot that was open for lessons, we didn't have anything planned.  Fate.  Plan old 'this is suppose to happen' fate.

What a fantastic lesson! The instructor went ahead and decided on an 'out of the box' teaching method.  How refreshing to have someone else do most of the work. I don't know who was more excited, my son, the instructor or me!  Turns out he has some natural ability when it comes to music and because he wants to do it, he listens to the instructor.  I promised to keep the GJOP readers updated and I will but for now, the boy wants a snare drum.  Have to find a non expensive snare drum.  Any ideas? 

This is how he is learning.  Instead of notes for now,
 he is learning right and left.  After a few weeks, it will
be converted to notes.  Loving his music instructor!

Tuesday, September 2, 2014

Sunday Sickies Suck

Yesterday was Labor Day and I get that it was Monday but the Sunday Sickies appeared anyway.  What are the Sunday Sickies?  It's when my boy gets so filled with anxiety about the new school week that he starts pleading and begging not to go back to school.  I feel horrible seeing him that way but homeschooling for us isn't an option plus once he is back, he loves his school, kids and teachers in his autistic support class and the typical classroom. 

Last night was a bit different.  Last night he threatened to run away.  Went all out and even wrote a note.  I didn't get to read the whole thing but it started off like 'Deer Famile' then he hid it from me.  Fortunately for us, he told us where he would run away to and luckily it wasn't far; right across the street exactly.  I spoke to my neighbor to give her a heads up in case he did come over to her house one day.  When he was a little guy he did wander off.  One of the scariest day in my life. 

Back to "I'm outa here." 

I gently explained that the neighbor didn't know where his swim lessons are so I'd better go ahead and cancel swim with Miss Allison.  With that, he ripped up the note, immediately calmed down and went to play with Ruby the Rescue Therapy cat.  Boy, I love that cat. 

We got through last night but what about the future? Not sure.  He hasn't been on any type of anxiety meds yet.  We are big into teaching him his own coping methods and to work through things.  I'm also looking into all natural calming methods.  Essential Oils are on the way! If they don't help then maybe anti anxiety meds may be the next step. 

In the mean time we have Ruby the Rescue Therapy Cat to help. He loves her and she puts up with him.  Lol. She needs a cape right?     

Ruby the Rescue Therapy Cat helping to ease my son's anxiety.


Monday, June 16, 2014

Shopping for Gifts

At the end of each school year I like to give a gift to all the wonderful people who have worked with my son throughout the year.  Most of us do, I think.  For my daughter, it was easy.  She is NT and has one teacher.  One teacher = one gift.  My son, on the other hand, has a teacher plus a bunch of aides and professionals.  He is autistic and is in an autistic classroom.  Every year I try to figure out the perfect gift to give these professionals to express my gratitude, all unnecessary, but I still do. 

As usual, I turned to the Grape Jelly on Pizza Facebook page to see what others are giving and many of you had awesome ideas!!  We all had one thing in common, many people work with our children and we didn't want to spend too much money. 

Not sure what to do, I went to the source and asked my son.  We went down the list of adults who work with him and he knew right away what two of them definitely had to have.  So, I decided to take it to another level and with a budget in mind, we went to my son's favorite store of all time....Walmart. 

With the list in hand, he took his time and picked out the gift he wanted to give each individual.  This year, there were only 6 at the school.  We were lucky.  I saw it in his eyes that he really thought about what each person should receive.  Some I was like, "Are you sure?"  When he absolutely was we bought it.

When we got home, he wrote out thank you notes.  When I say that, I mean the front of the card said Thank you so he wrote his name on the inside the wrote the person's name on the envelope.  We dug out all the gift bags we had received over the years and he went thought each one to put each gift in.  Someone received a Valentine's Day bag but I let it go. 

It was fun to see his take this from beginning to end.  As a mom, I find it hard to let go and not to take over but I think he handled it perfect.  I'm sure the receivers will think so also. 



Six gift bags all ready to be dropped off at school.  He did
a great job picking each one out.  Very proud of my boy.

Tuesday, April 29, 2014

Siblings

Siblings.  My two are close in age and some days it seems like they continually argue and pick on each other.  Many years ago I had my son enrolled in karate to see how he would like it.  Long story short, after about 5 months, I pulled him out because I was the one getting the workout.  Getting him into the car and eventually into the dojo would make me break out into a sweat, not to mention I had his little sister with me and her bag of things to do.  All this work for 1/2 of him not listening, making faces in the mirrors and yelling and screaming.  So he didn't go anymore. 

A little over 3 years ago my daughter decided she wanted to give karate a try and being familiar with this dojo and the sensis, I enrolled her.  It ended up she really enjoys it and has started her black belt testing which is a series of 5 days of tests.  Very intense.  Here's the thing, he loves to watch her and encourage her but hates to be in the waiting room.  I can't tell you how many hours she has waited for him in waiting rooms, most of the time without complaining and he can't stand waiting for her.  Not one bit. 



A picture he took of his feet in the
Karate waiting room.
In the beginning, he refused to even go into the building;  it was an awful waiting room experience.  We even had his BSC meet us there to work on his coping skills.  We should show up with a backpack filled with stuffed animals or let him play on my phone or bounce a ball or whatever his preferred was.  We had lots of sensory toys also and pressure activities.  Sometimes I would even park in the front and have him wait in the car for her but that used to make me incredibly nervous.  I believe it was the actual waiting room with yellow walls and florescent lighting that would drive him crazy, not to mention all the parents and siblings also waiting.  Sensory overload at its finest. 


He watches her through the glass and
 tells her, "Great Job!"
After all these years and all the belts she has gained, he has never attended a graduation until the end.  We usually took 2 cars and hubby would leave with him after he had too much, which was usually after 15 minutes but 3 months ago....he insisted going into the dojo packed with people and stay for the entire graduation!  This was big, I mean HUGE!  After she earned that 3rd degree brown belt we started talking about May, she would be testing for her black belt.  He repeats, "Black belt in May?" many times a day.  He also checks the calendar to make sure May is coming.  This makes my heart so happy that he working on his coping skills so he can be a part of this, encourages her daily and is genuinely excited about her accomplishing her goal.

 I can almost guarantee he will be in the dojo cheering her on.  She is his biggest fan and vice versa. 


Thursday, April 24, 2014

When you are at your Witts End....then what?

Have you ever had one of those days when nothing goes right?  You are exhausted and can't seem to wake up.  Coffee doesn't work, candy doesn't and you don't even have enough mental capacity to do anything?  Your stress level soars out of control.  You can't seem to get it together and then to have a screaming toddler who keeps coming at you and at you and at you.  What do you do?

A long time ago when he was little, that was one night at our house.  One night I hate.  It was awful and I don't even like to think about it.  I choose to look on the positive side of things so going back gets me rattled.  People read about many good things that go on in my son's life, our lives and I prefer that but let's get real.  There are also dark sides to having a child with autism. 

This one particular night was horrible.  He was so little.  We didn't know he was autistic.  I had a newborn.  When my son was little he never slept.  I had no idea how he could even function.  It seemed so odd.  He would wake up every 3 hours and was like that for so many years.  Every single night he would get up.  Then add breastfeeding a newborn to that one and guess how much sleep I would get?  Sometimes hubby and I would be talking and I would have absolutely no idea what the heck he would be talking about.  There are events, days, weeks that I couldn't recollect and it still happens.  Sleep deprivation. 

Back to the day.  There was no sleep for me.  My son was particularly cranky and wanted full on attention that day.  It was difficult for me to juggle the two kids because I wasn't able to think clearly.  That early night, my daughter was sleeping and I needed a moment to myself.  Just 5 minutes.  That's all I wanted.  I put my son in his room and he started crying then yelling then screaming.  Screaming.  That's all I heard.  I had had it.  He needed to stop because if he woke up his sister I swear!!  Hubby was working long hours and he too wasn't getting much sleep either.  He needed to work...he was the only income.  All my son had to do was go into his room, filled with toys for 5 minutes so I could regroup myself.  That doesn't sound like much.  Just 5 freaking minutes.

But no.  No.  No.  No.  The screaming was loud, I was starting to freak out.  I kept putting him back in his room and trying to shut the door but he kept running after me straight to the door.  Over and over again.  I started crying.  He was screaming.  I started yelling.  He kept screaming.  I was yelling and sobbing at this point and trying to keep him in his room.  All I wanted was to close the door.  5 minutes.  All the sudden my husband came up the stairs and started grabbing my arm and yelling at me.  I didn't know what the hell was going on.  I started to put my son back into his room and hubby started yelling at me.  Crying, sobbing I lost it.   I turned to hubby and told him to get my son out of my face.  I ran down the stairs and outside.  Sobbing.  I couldn't believe what was happening.  I lost it.  I didn't hit him.  I wanted to screaming to stop.  I only wanted 5 minutes to myself.  Just 5 minutes. 

This night still haunts me.  I feel like it was such a low as a parent.  I don't like to think about it.  I had no where to go for peace and quiet.  There wasn't anyone I could talk to that would understand.  I felt so alone.  We felt so alone, hubby included.  So when the Grape Jelly on Pizza readers tell me how they feel I do understand.  We all go through this at some point and if you don't, then you are blessed.  Go ahead and tell me about your lows, you won't be judged.  You will find others do understand. 

That was so long ago.  Things have changed.  My son now sleeps for the most part which means I catch some Zs also.  We also have a great relationship.  That will be another blog, another day. 

He was only 19 months when he refused to sleep in his crib
anymore, so he got his big boy bed. 

Monday, April 14, 2014

Wandering....Take Two

Earlier this month I shared his very first wandering event when he was 3.  Took my breath away but he was brought back to us safe and sound.  The following story happened when he was 4 and this was the last time he tried to take off. 

Spring cleaning time at my house.  I couldn't wait to open up the windows and air out the place but the windows were horrid so that was my first job of the day.  Little did I know the day would end with a locksmith at my house and hundreds of dollars spent on security; our security knowing he wouldn't get out. 

I was in our side room and my son was playing.  His kind of playing at age 4 was mostly banging, throwing and verbal stimming.  Hyper vigilant.  That was me.  I always made sure I heard him and could always see him.  I took my Windex and paper towels and went into the side room to clean some windows.  As I was about half way through I realized I didn't hear banging or stimming so I called out.  He didn't answer so I walked into the living room only to see a side door to the alleyway wide opened.  My heart sank.  Not again!  It had been less than a year ago when he slipped out the front door and took off down that very same alley.  I ran outside and ran to the front of the house only to see a glimpse of his bare feet running as fast as he could to the local college.  He was fast approaching a busy road.  I never ran so fast.  Caught up to him, picked him up and carried him back into the house, locked the doors and told him not to ever do that again.  He started to play in the living room again so I went back into the side room to finish up my windows. 

Wouldn't you know it, that little stinker did the same exact thing.  This time I was listening out for the door but didn't hear it.  I picked up my Windex bottle and saw him outside running past the window I was about to clean.  Same thing happened and I brought him back into the house.  At this point my heart was racing because he learned how to unlock and get out that particular door.  Seriously, how was I going to ever keep this kid inside this house! 

I called my husband at work and we decided to immediately call a locksmith to get some key locking deadbolts.  The locksmith was at the house within the next 2 hours.  All that time, I didn't even use the bathroom because I had a feeling this kid was going to take off again.  Its like tunnel vision and that was all he wanted to do now.

When the locksmith came, I told him of our dilemma but he refused to put key lock deadbolts on all the doors for safety reasons.  After I calmed down I realized he had a valid point.  Safety.  What if there were a fire.  OK, then what?  He thought about it and came up with this lock.  He called it the hotel lock.  They were installed on all the first floor doors.  *For some reason, that particular house had 4 first floor doors.*  Considering he was only 4 he couldn't reach them so we had them installed and it kept him safe, this was until he figured out if he took a hanger or long toy he could swing it open but that wasn't until a few years later. 

So in my experience, even though you are with them, they can still take off right under your nose.  Do what you can to keep them safe before something happens.  Door chimes and locks will help at least deter them for a while.  What do you use for your doors?

This worked for years until he figured out how to swing
it opened with a hanger or long toy. 

Friday, April 4, 2014

It Started Off Good

This past weekend was like any other weekend, busy.  We usually keep busy because my son loves to be on the go, go, go.  There was a Special Needs Expo and the kids really wanted to well, go!  They do love them.  It is sorta like Trick or Treat.  Mom gets to visit with vendors, maybe learn something new and they come home with bags of pens, paper, candy and toys.  And that is where it gets ugly.

Toys.  This is a vendor fair so the 'toys' are maybe 5 cents each but are treasured keepsakes to my son.  The tables where you get to spin for a prize is highly preferred.  We runs to this table and spins for a prize.  It lands on clapper.  You know what these are right?  I believe they fall into the musical instruments category but are mind numbing to others because of the loud clapping.  My son loves them but the only color they had out was pink.  He hesitated and the woman told him she will look in the bag for other colors.  She whips out silver, blue and gold.  GOLD!!!  He wanted the gold one.  He found his prize possession of the day.  He slips it into his bag as to protect it and not let anyone near it.  We go home.

At home the kids empty out their bags on the dining room table to ooh and aah and to of course, devour any candy they have collected.  He then starts clapping his clapper then the unthinkable happens.....it snaps.  "Oh no" he says.  "Oh boy" I say. 

"Fix it Mommy.  Fix it."  Let me see it.
"Fix it!!"  His anxiety is starting and elevating rapidly.
I don't think I can honey.  It snapped.
"Fix it!!  We need the toy Doctor....NOW!"

Then it happened, he went into full meltdown mode.  Two hours of crying, sobbing, yelling, and slamming.  All over a less than 5 cent gold toy.  The day ruined.  All over this freakin' toy. 

When he goes into meltdown mode, we make sure he is safe but then stay away.  He has the tools to calm himself down and will use them.  He got quiet, came downstairs and started with me again about taking it to the toy doctor.  I told him it was broke and saw the anxiety starting all over again.  I don't like to every lie to him but since it was Saturday, I told him that I would take the toy to the doctor on Monday while he was at school.  This bought me some time so when he gets the news that the toy can't be fixed, hopefully he won't be so quickly to rise. 

His prized possession, the gold clapper.

Sunday morning he came downstairs, found me and told me he was sorry.  I asked for what and he said he was sorry for crying and yelling.  I told him it was alright and that I understood.  Then he gave me a hug.  He has come so far managing his meltdowns.  It made me so proud of him. 

Thursday, April 3, 2014

A Simple Day, Throwback in Time


Two summers ago we made the difficult decision to move into a different school district for my son's sake.  This particular day, he was having an extremely hard time in the new house so I stopped unpacking and said, "Let's get out of here."  We didn't go far and ended up at the Fish Hatchery...just the two of us.  I took some pictures of him feeding the fish and before we were ready to leave, he asked for my phone.  Then he told me to 'stand in the fish'.  Notice the little fingers while he took my picture.  We both needed the break and extra bonding time.  While I don't like to see pictures of myself, this is one of my favorites because he took it. 

Wednesday, April 2, 2014

A Quilt Like No Other

Every once in a while something out of the blue happens and it is very heartwarming and just WOW!!  Saying thank you doesn't seem to be enough so I'll write about it and show everyone what was given to my son. 

I received a phone call that a friend of the family had made a quilt for my son.  I could keep it or donate it for auction; it was my call.  We went to pick it up and it was in a black garbage bag, neatly folded.  My son opened up the bag and said, "WOW!!"  I didn't get to see it.  He quickly covered it back up and carried it out to the car.  When we arrived home, he grabbed the bag and ran upstairs.  I heard, "How cool!"  He yelled down for me to come up to his room.

When I got up there he was so excited!  And so was I.  This quilt is awesome!!  Here are some pictures of it. 

First Side


Second Side
 It remains on his bed and by no means will we be auctioning it off.  It's a keeper!  Thank you so much Patty and Lois for this quilt.  My son loves it. 


Awesome Tag!!

Tuesday, April 1, 2014

The Day That Stopped

It was seven years ago when our world stopped for what seemed to be an eternity.  Our 3 year old, non-verbal son got out of the house, ran down an alleyway, crossed 2 busy streets and was eventually found by 3 young men.  How did this happen?  We let our guard down for 30 seconds. 

We knew something was different about our son but we were in denial.  It wasn't until the summer of 2007 when we contacted the County and started receiving help.  His official autism diagnosis came in May of 2008 but back to the story.

It was a day to celebrate.  The family was getting together to observe my in-law's 40 years of marriage...40 years!  Unheard of nowadays.  We had my brother in law's family coming from out of state and couldn't wait to see them.  My son was always here and there so we were hyper vigilant with him.  We were always stopping to see where he was at all times throughout the day and night.  Our company came to the front door and everyone, but my son, came to greet them.  We all moved into the living room, gave out hugs and kisses and then called for my son.  He didn't answer, he usually didn't, but you could at least hear him banging toys or verbal stimming but we didn't. I checked the basement, hubby checked the upstairs.  Not around.  I checked the fenced in backyard, bathrooms.... nothing.  My heart sank.  With all the welcoming, we didn't close the front door.  We left the front door unlocked!


He hardly ever looked at the camera.
Everything froze.  Hubby started to panic and ran out the front door, heading towards the college.  My brother in law left the house but I didn't see which way he went.  I told my sister in law to stay inside with the kids and I walked out the front door.  *I can't explain it but in emergency situations, I get very calm.*  I did a quick scan and heard laughing next door.  Our neighbors were having an outdoor party so I knocked on their fence and got their attention.  Looking at my neighbor, all I could say was "he is gone".  With that, my neighbor quickly gathered all the adults and they started pouring out of their backyard to join in the search.  At that very moment, far down the alleyway, I saw 3 young teenagers and one was carrying my son.  My brother in law appeared out of no where and reached them first, taking him into his arms.  Starting to let my guard down, I immediately teared up and held my son.  A long hug and tears was all I could do.  My son didn't like to be hugged or held for long so as he started struggling the teens told us what they saw. 
 
My son was running, full blast down the alleyway, crossed 2 busy streets without getting hit by a car and just stopped when he saw a ball in someone's backyard.  It was that bright, colorful ball that grabbed his attention.  The boys tried talking to him but since he was non-verbal, didn't say anything.  They weren't sure what to do so they picked him up and figured someone would be looking for him so they just started walking up the way he was running.  Thank God.  Thank God.  There could've been so many things that could've gone wrong that day but someone was with him.  A Guardian Angel, family that passed and was watching over him, I will never know but he was safe and back with us. 

What some people don't understand is parents with autistic children are on hyper alert all the time.  All.  The.  Time.  We don't get a day off.  We don't fully sleep.  We let our guard down for seconds and that is all it took for him to slip out the front door and run. 

We went to the anniversary picnic and that was a horrible experience in itself.  We knew something was off with our son but we didn't know it was autism at the time.  Here is a picture of our family when it was picture time.  See how he is crying and holding his ears.  We should've known but we didn't.  I never knew anyone autistic at the time but I sure know many now. 

We didn't know at the time he was
 autistic.  All the signs were there.

Tuesday, March 4, 2014

Help Wanted.... You Are Worth It.

Where to start!  First, I love food.  Cheese, Ranch dressing, pizza, chicken pot pie, lasagna, turkey with mash potatoes and a river of gravy, BBQ ribs, oh my goodness my mouth is watering.  There is always a baked good around.  How wonderful it is to have some chocolate cookies to go with my coffee, or a slice of carrot cake with creamy icing or key lime pie.  Good gracious.  So when I had a Doctors appointment after completing blood work it was a complete shock when he read the results. 

**Note.  This is written after I had a conversation with my Mom.  The last time I wrote about my health, she was a tad upset with me that she read there was a problem, so this time she got a call and we talked about it first.  Never cross your Mom.**

My son, who is autistic will eat anything.  My daughter, who is NT is a problem feeder and has an extremely limited diet.  At least 2 meals are prepared every night.  My hubby's health insurance through work was giving us credit if we both got our cholesterol levels checked so he did it asap.  I, on the other hand, dragged my feet.  I have a problem with needles so it fell to the bottom of my list real quick. 

Starting end of November 2013, we began hearing about so many people who were fighting cancer or passing due to sudden deaths.  It was a bit crazy because it was becoming so frequent, like at least 1 person a week.  It started to really freak me out.  I got my butt to the Doctors office but I didn't want to just get cholesterol checked, if I were to have blood drawn, then I wanted a bunch of tests completed.  So my Doctor did just that because it had been 8 years ago when I had blood drawn.  Bad on my part, I realize that now.


This is what I saw every Sunday night.
Back to the results.  My cholesterol was high along with elevated sugar and protein.  He wanted to put me on meds to help reduce the bad cholesterol numbers.  No!  Not pills!!  I witnessed my grandmother's health decline over time.  Mom and I talked about how on Sunday nights she would get out all her prescriptions and count them out for the week.  You know, the day of the week pill box?  There were so many.  In my memory, it all starts with one little pill and the next thing you know you are onto like 20.  I asked for more time before I started with a pill.  Time to work on getting my counts down the natural way.  So he gave me 3 months to work on it.  Then I asked him for his advice.

Little known fact about myself, if something scares me, I will go extreme and do my best.  As of over a week ago, I no longer am eating anything dairy or meats of any kind....well, fish at least 2x a week.  Went to the book store and bought books. Changed my diet that day.  In fact on the way home from the Doctors office I stopped at the grocery store and only bought fruits and veggies and Almond milk.  I immediately started eating differently.  Sorta hoping that my new eating habits will spill over onto my daughter with her limited diet.  We all need to eat better. 

What a shock to my system!  It's a whole new way of eating and I'm not starving.  I have lost 4 pounds to date and I am sleeping better through the night...go figure.  I am not craving chocolate or junk food. 

Why am I telling you this?  Two reasons.  First, I need help.  When I need help with my autistic kiddo I ask everyone on the GJOP page for advice.  What books do you read, what pages do you check out, where do you find awesome recipes?  Second, this was a wake up call for me.  As parents we need to stay healthy for our children.  When was the last time you had blood work done?  A physical?  I know now I will be going every year for a complete physical.  I owe it to myself and I owe it to my children to be as healthy as I can be.  Will you join me?

Monday, March 3, 2014

Safety Behind Screens

Cyber bullying...the new fad.  "How would you like it if it were you?" we ask our kids.

Schools have assemblies about bullying.  Parents talk to their kids telling them how bad it is over and over again.  Speak up if you see it and report it to a responsible adult.  Companies pay obscene amounts of cash posting billboards.  There are TV shows and movies about it.  These are good things and should keep happening but what if some kids can't control it? 

When was the last time you were driving and someone cut you off.  Bet you said something like, "You effin jerk!!  Get in your own lane a$$hole." You said this because it happened so quick, you got scared but yet empowered because you were in your vehicle and they were in their vehicle and there was no way they heard what you just said.  If you were face to face with an individual and they accidentally stepped in front of you and you fell, would you immediately get up and say the same thing to them?  Probably not.  You would be exposed.  You would have to see their face.  They might react.  There would be immediate consequence for your words. 

It is so easy to sit behind a screen and say whatever you want.  Sending a derogatory email without picking up the phone is less painful, for you.  If you don't want to read the response back, then walk away. Turn it off.  Or feed into it and get involved but not really.  You aren't face to face with that person so you are brave and more vocal and more mean.

Kids are getting devices at a much earlier age.  My 8 year old asked me for her own phone.  Yeah right.  But there are kids in her class who do have cell phones.  Seems like 10 in the new age to get devices.  They text.  They take pictures. So they can keep in contact with their parents, maybe that's how it starts.  Then children get older and they get Facebook, accounts when they are younger than 13 with the parents permission, of course, because as long as the parent have the password, they believe their child will be safe. Wrong.  Kids are smart.  They know how to outsmart you and will do it over and over again.  They have friends who are more tech savvy than you.  They can block parents from seeing certain things.  Belong to secret groups.  All the while, hiding behind the screen.

My take on Cyber bullying. Some kids can't help themselves.  A young adult's prefrontal cortex is not fully developed yet.  This helps with reasoning and to control impulses.  It may take up to the age of 25 for these impulses to get under control.  If a mean thought pops into their brain, without thinking, it is circulating and sucking even more meanness into the situation.  Example:  if a girl wears something so 'awful' and someone takes a picture of it with a caption like, "WTF is she wearing?" then sends it around to her social media then don't you think, within the comforts of hiding behind a screen, other girls may then start to chime in without taking into consideration about the girl who's picture is now circulating around with more and more wicked comments are being said.  The girl sees it and is devastated and is now the target.  See how easy that was to start?  It is so simple to say things behind a screen and not face to face.  There is no consequence for the girl who started it, or very little.  Would she have walked up the girl initially and said, "WTF are you wearing?"  Doubt it.  Face to face confrontation takes way more guts and I bet that would help with their reasoning and controlling their impulses.  Cyber bullying is a safe way to bully and gains pack mentality quicker especially when hiding behind a screen. 

We do need to make the ones who start it accountable. Absolutely.  As parents we need to keep talking with our kids about the after affects of it all.  How it is not OK to do it and to report a problem if they see or hear about it.  We know all this.  They have heard it so many times. 

Lets try something new. 

How about less technology?  Take the phones away or maybe not have unlimited text?  Do they need to take phones and devices to school?  What happened to getting together and leaving the social media out?  Tell them it is OK to disconnect.  Spend non-tech time together and interact with friends more.  Wishful thinking.  Possibly. 

Times are changing.  Our kids have to manage all this technology thrown at them and learn how to be responsible at a much earlier age but if they aren't fully capable of that because of the way they develop then what are we to do?  

Going Old School-80's Sleepover
No devices back then, just talking.

 
*This writing is about cyber bullying and not about autism in general.  For more information about autism, please like the Grape Jelly on Pizza page or read other articles on autism in this blog.* 

Wednesday, February 26, 2014

Thank you for the past 4 years.

It was 4 years ago today when the page Grape Jelly on Pizza was created....and I had no idea what I was doing!  Haha.

Everything is always a work in progress.  Everything.  From the time you wake in the morning until you put your head on your pillow at night you must try to improve upon something. (My logic anyway.)

Being a parent of an autistic boy made me realize this quicker than anything because everyday is a gift and a struggle all at the same time.  So many decisions need to be made.  So much research, frustration, trial and error, but most of all progress and motivation must always be in sight.  Some days are tougher than others especially when you are delirious over lack of sleep and the unending energy levels of our children bouncing off the walls are a constant.  Although, some coffee in the morning and red wine at night seem to help me along.

What I've learned in the past 4 years:

We are stronger when we communicate with other parents and share our stories.

What works for some does not necessarily work for others and we must remember this and respect this.

Parents are the best resources

We are not alone.

I look forward to signing on to the computer every morning to see what you have to say and to see what new things there are to learn.  Throughout the years we have had many readers make key chains, necklaces and pictures for us which make my day!  *some are shown below*  We also had a few Mommas want to write for the blog, do they did.
All amazing moms who wanted to be heard.  And why not?  That is what GJOP is for.  Not to mention a reader, who was writing her own book, included one of my blog entries in her creation, This Extraordinary Life by Rachel S. Quatkemeyer.  Still over the moon about it!!

Thank you for sharing your stories, progress, heartbreak, pictures of your kiddos and asking questions about autism and how it affects your children, your relationships and your lives.  Hope to hear from you soon.  ~Jennifer



Made by Shawna Lane Creations
Made by A Chameleon in the Spectrum
Made by Reader Bethanie
and her family!
Made by Adventures on the Spectrum
Made by Mommy Buddy




Wednesday, February 12, 2014

Decisions

Decisions, decisions, decisions.  Every day we make them.  Some are easy and some not so much.

Add mayo to the hoagie or oil and vinegar or no hoagie but a salad instead?  Depending in the time of month, that one is easy.

Continue his services as they are now or take away TSS and continue only with a BSC or end both?   He would love that but what about new behaviors and the summer time and going places?

It is so easy to over think decisions to the point where they can cause your stomach to churn and give you a headache.

Being a parent of an autistic child, I find decisions are more difficult for me to make and there are so many more of them!  It seems like his decisions are bigger, more grand with much more at stake.  What if I make the wrong decision for him, would it set him back for months or even years?  He has been receiving services for many years now and part of me is ready to let some of them go yet the other part is thinking we may need them in the future.  And it's not like you can get them back easy.  It could take months or a year until we get them back or the state can flat out say no to all services.

Managing the page has taught me many things but the main one is others agonize about decisions also.  My advice to them is always go with your gut.  My gut is unclear now.  A mom joked about where is the manual when you have a child?  We should all get a manual that when decisions have to be made, turn to the specific date and read what you are suppose to do.  I didn't get my copy.  Ha ha.

I will take the leap of faith and make a decision soon.  When he is older, I would love for him to be able to let me know what he wants but for now, I have to be the adult and decide for him.  Only hope I make a good choice.

Yep.  Another decision that makes me want to scream!!

Thursday, January 9, 2014

Turn Taking Games Are A Challenge

Autism.  Therapy.  They go hand in hand.  Usually as soon as you get the diagnosis you seek therapy.  Whether it is speech, OT, physical, social, DIR, ABA, BSC and TSS services or countless others.  One of them or all of them you go for it and submerge your ASD kiddo into therapies.  It seems like our children 'work' all the time right?  At least it is like that in my home.  We combine therapies and playtime so it may seem like playing to others but it takes work to play.  You get that, right.

After years of trying to get him to take turns to play a game, like SCRABBLE, it happened voluntarily last night....like didn't need to set the timer to get him to sit for 1 minute, didn't have to give him a reward for taking 1 turn and another reward for taking another turn.

I picked up this game called Bugs in the Kitchen.  We have so many games that we tried but none of them kept his attention with the exception of the Pizza game, introduced to us by his former TSS turned BSC but even with that the directions were tweaked a bit.  In other words, our game collection was huge but no games were preferred.

Anyway, this game grabbed his attention and kept him at the table for not only 1 game but 2 whole turn taking games!  A simple concept.  A simple design.  An easy direction game.  Plus, bonus, nano HEX bugs.  The game comes with one and I purchased 2 more in different colors so he has a choice.  Roll the dice and either a fork, spoon, knife or ? come up.  Then you turn that utensil to eventually make a path into your trap.  The nano is running the entire time so it is bouncing, turning, making noise (totally sensory) and it made him extremely attentive to the game.

Wanted to share because it is rare to keep his attention let alone play a turn taking game with his sister or anyone for that matter.


Playing Bugs in the Kitchen...genius game! 

Wednesday, January 8, 2014

Happy Birthday To You. Happy....Migraine?

It was a big day...his 10th birthday!  The day was planned.  Celebrate with cupcakes at school, celebrate with his buddies in the after school program then head off to Red Robin for a cheeseburger and fries then come home to cake and presents....sounds exhausting right?  But things don't always go according to plans.


First, school was cancelled due to the wind chill factor being at -20 which meant not only was there no school but no after school program.  Bummer but totally understand.  So that left me at planning a super fun filled birthday day!!


We bundled up and went to Perkins for breakfast.  Not only did he eat his entire breakfast but half of mine also.  That is what growing boys do, finish their food then scan your plate for more.  Then we went to Toys R Us to spend some gift cards they kids received at Christmas.  They love doing that and are really good at knowing how much is on the card and how much they can spend.  Then a local craft store, which they love and back home.


Late afternoon he started to lay down, which is almost never done.  Told everyone to 'leave me alone.  I'm watching Animal Planet' so we did.  After all it was his birthday. 


Dad came home early and we were getting ready to go to Red Robin.  Everyone's coats and hats were on and then he said, "No hot dogs.  Hot dogs make me throw up."  Now why did he say that out of the blue?  The guessing game started.


Does your belly hurt?  No.
Does your head hurt?  No.
Is your throat laughing?  No.  (We learned 3 weeks ago that when his throat laughs, it means he is about to get sick.)
What hurts?  Leave me alone.
Do you want to go to Red Robin?  Shakes his head yes but starts crying and reviews with us that "no hot dogs.  they make me throw up."
Are you still full from breakfast?  No.


A few more questions then we asked if he wanted to go back to the couch and he did.  "no food.  no food tonight." 


OK so his stomach was upset.  "Does your belly hurt?"  No.  I need my PJs.  OK.  See how this can be confusing?


Now parents, you know when your kid's belly hurts you get the towels and blankets ready along with the bucket just in case.  Hubby and I were monitoring him and watching him trying to figure out what was wrong.  So many different scenarios to choose from with no information from him.  I don't blame him.  Maybe he doesn't know.  He talks to us but WH questions still are a challenge. 


My NT daughter would be able to tell you the exact place she hurt with details to spare but I find with him, it is a guessing game.  About a month ago he demanded we take him to the emergency room but the only thing he could tell us was 'this hurts' and pointed to his back.  Now, here is the frustrating part.  I call his pediatrician and they ask what are his symptoms.  We go over the list and nothing.  He doesn't complain about anything but points to his back.  The doctor said to take him so we did and they prescribed Miralax.  Then when he got home he told us 'all better'.  There is still a communication gap but it is getting better. 


Finally he asked for the lights out.  OK, now we're getting somewhere.  Migraine?  He has had a few before but doesn't complain about his head hurting....ever. 


Giant Eagle from Angry Birds.
 He has been asking for it for over a year now. 
Feeling bad about his birthday, as moms usually always feel guilty somehow, we at least got him to open his gifts.  He wasn't thrilled and wanted to just lay down but when he saw the size of the last one, he got excited, opened it, then laid back down. 


We'll celebrate another day but if I may make a birthday wish?  I wish he would be able to tell me when something hurts or when something is wrong or when he just feels down.  We only want to help him but the guessing game makes it so much harder.