John's Sensory Overload Moment

I was substitute teaching today and I was invited to participate in a "Rainforest" assembly.  The animals were so incredibly cool!  Then, I learned that they would have a special show tonight for anyone to attend.  I thought about John and the animals.  He would think they were incredibly cool, too!  So, I took Jacob and John with me!  Jacob is almost 4 years old and John is 5 (on a 3 yr 7 mths development level).  Yea, it was stressful trying to get two kids to sit still in their chairs!

It all started by John not being able to see the stage for the adults in his line of vision.  Understandable.  So, he stood up in the aisle.  I kept pulling him back to sit back down....but he'd keep fighting to see.  I finally let him stand in the aisle so that he could see the Macaws fly overhead.  He started jumping up and down with the widest eyes and the biggest smile!  Yea, I was an AWESOME MOM at that very moment in time!  Then, I started watching him closer.  He started flapping his arms around and rocking back and forth a lot.  Interesting. I have never noticed this behavior being so pronounced before.  However, I have never had John in a social situation like that before!  There were at least 100 children at the front of the gym/cafeteria in a very bad acoustic situation.  John most likely has auditory processing disorder and sensory integration disorder based on observations from me and a school psychologist (not a confirmed dx yet).  When the lights came on to see the Macaws flying, John flipped out and started yelling to turn the lights back off!  He stopped once he saw the birds, though.  The show took an intermission to take snake photos with the kids.  The lights being on and the strong amount of talking and excitement in that small room was suddenly TOO MUCH FOR JOHN TO TAKE!  He demanded to go home!  He was still flapping his arms around.  John simply can't handle a lot of stimuli in his environment.

John can't handle taking a bath.  The water tickles.  Bubbles tickle.  Brushing his teeth tickles!  Yet, the pediatric neurologist does not want to confirm any dx with him.  All I get is globally developmentally delayed.

I also get a LOT of stares and folks openly whispering to each other when John starts his disruptive behavior of arm flapping and yelling with excitement.  Let me tell you this:  I ♥ that my son is so incredibly excited about life!  You will rarely see me asking him to conform to society's rules.  He's a child - he is loud - he is full of creativity and fun!  Get over it!

I have been telling his pediatrician since he was 18 months old that something was going on with John.  He suddenly lost his words!  Yes, for those interested, he HAD just had his MMR shot.  Now, this never happened with Jacob and he's 15 months younger!  Interesting, huh?  For a while, I had thought that John had simply regressed due to his brother being born.  John's speech was not improving by age 2.  I told the pediatrician AGAIN.  I got, "Wait until it's a problem."  Yea, I called my insurance companies and gained authorization to venture out on my own and obtain speech therapy for him.  They found that he was more than 25% delayed.  After paying $700 out of pocket for the dx and speech therapies, they finally told me about Early Intervention Services (our county has one).  They came out to the house to dx him.  He qualified for FREE services (regardless of insurance or inability to pay).  The speech therapist came in and saw a need for an occupational therapist and then a special instructor.  It was then determined that John should develop social skills through the county's preschool for children w/special needs.  John has attended this preschool since Feb 2010.  EVERY year, the pediatrician has been given progress notes from all therapists and any given diagnosis.  Yet, nothing is every said or done.  I then met with my pediatric neurologist in June 2010.  He had moderate receptive/expressive speech delay, mild visual/motor delay and disruptive behavior disorder.

In Feb 2012, I had John's 5th pediatric visit for annual visit/shots.  It was at this very moment that he OBSERVED John and mentioned that perhaps he was autistic.  He noticed his repetitive mannerisms and finally listened about John's selective diet of "white foods" or starches.  However, he wants to FIRST WAIT until John has been in elementary school to decide.  Here's the fun part:  John will need an IEP in order to be successful or have a fighting chance in elementary school!  Our local school system has an autistic class, but without this dx.......John won't receive those services.  So, John had a follow-up appointment with the pediatric neurologist.....who changed his dx to moderate receptive/expressive speech delay, disruptive behavior disorder and NOW....globally developmentally delayed.  He tested him to be on a level of 3 years and 7 months at age 5.  Globally developmentally delayed is a cop-out and worthless dx.  It will NOT entitle your child to receive an IEP or specially designed instruction.  There are 13 categories that will.  That is not one of them.  Speech delays will.  Learning disabilities will.  The school psychologist examined John and found auditory processing disorder and a strong disconnect in the verbal/non-verbal skills.  John's IEP now includes Learning Disability and Speech delay.  I'm actually waiting for emotional support classes for his disruptive behavior.  Like I mentioned, I've been in the schools.  I've sub'd for several classes - including special education.  However, it's MUCH different when YOU are the parent!  When it's YOU fighting for your child in the public school system, you will be tempted to give in and just homeschool.  I'm not giving up.  I've got an ADOS test set up for John in June.  He will continue his special education preschool over the Summer.

I feel that, as a parent, I have gone above and beyond trying to find the appropriate services for John.  He is now working with a feeding clinic for his white foods diet.  Just think........if I had listened to our pediatrician...........Wait til it's a problem...........would John be functional at all?!?

I hate to cook!

As the title of this posting hints at, I HATE to cook!  I have absolutely NO interest whatsoever in it!  haha  However, I MUST feed my brood of boys!  I did a quick inventory.  Ground beef?  check!  Can of refried beans?  check!  Taco seasoning?  check!  Wow...this is sounding promising!  Shredded cheese?  check!  Lettuce?  check!  Oh my goodness!!   I might actually be able to make a meal!  Taco sauce?  Taco sauce?  Now, WHERE did the taco sauce go?  Oh, there it is!  WAAAY in the back of the refrigerator!  WOOHOO! Now, all I need is......chips!  I must admit that I'm quite "brand loyal".  I used Grande Chips, Daisy Sour Cream, Kraft Shredded Cheese with Touch of Philadelphia, Ortega Taco Seasoning, Ortega Refried Beans, and Ortega Mild Sauce.  As a matter of fact, my local grocery store had Grande Chips on sale AND had a coupon for $1.50 off of ground beef if you purchased 2 bags of chips!  We L♥VE Grande Chips, so it was a no-brainer and a win-win!!  The result?  A very quick and easy meal for my family and a guarantee that my children will at least eat the chips!  =)

What have I been doing recently?

I have an upcoming medical appointment at Hershey's Feeding Clinic this week to address John's selective eating disorder.  I was told by an assistant that John's diet is considered to be a "white foods" diet.  This is typically what John eats:  Martin's potato bread (2 slices), diluted apple juice, Kellogg's Krave cereal (chocolate is his favorite color!), banana (but has to be just the right texture).  I figured that John liked foods of the yellowish spectrum.  What it boils down to is that John has preferences for specific colors and/or textures to satisfy his sensory disorder.  Now, John has not been officially diagnosed with either.  However, John can not stand to get a bath as the water "tickles".

I recently had John's school psychologist meet with him to review his skills for the kindergarten 2012-2013 school year.  She is pretty certain that John has auditory processing disorders.  They do go hand-in-hand with the sensory disorder.

I have met with John's pediatric neurologist twice as of now.  However, the only diagnoses that he can muster is: moderate receptive/expressive speech delay; globally developmentally delayed; and disruptive behavior disorder.

John has MUCH more going on than just what the pediatric neurologist has diagnosed him with.  I'm getting "cop-out" diagnoses.  In other words, he is not entirely sure what is going on with John.  Now, our media wants us, as parents, to seek out an early diagnosis for our children so that they can start getting the help that they need.  Come on!  I've been trying to get help since John was 18 months old and lost his speech!  My pediatrician said, "Wait until it's a problem."  At our 2 yr appointment, he said, "Wait until it's a problem."  Well, that's all it took for me!  I paid $700 out of pocket after 1 of 2 insurances paid for a speech evaluation/services.  I found out that he was approximately 1 year delayed on his speech.  At that time, I was directed to our local state agency that will send therapists to the home FOR FREE, regardless of the parent(s)' insurance situation and ability to pay.  We started with a speech therapist.  She saw a need for an occupational therapist.  She then saw a need for a special instructor as John's fine motor skills were not developed.  Gross motor skills are great!  We then had 3 people coming into our home 3 different days of the week.  We sat down and discussed his lack of social skills and agreed to move him into the agency's local preschool for children with special needs.  John was recently evaluated by the school psychologist as being almost above average in nonverbal, but below average in verbal skills.  It appears to her that he is equivalent to a child that has never attended preschool.  Nice.  He has been in preschool since he was 3 years old.  I was then told about the auditory processing disorder being a possibility.  I contacted our ENT and he was too young to evaluate.  I spoke to the lady that performed his hearing test and she agreed that he was too young and the fact that he is developmentally delayed means that we should probably wait until he is 7 years old to perform this test.  Nice.

I am hearing from society, as a parent, I need to pursue an early diagnosis for John.  HOW?!?  I feel that I have DONE EVERYTHING up til now!

I have to agree that he probably does have auditory processing disorder.  There is a LOT of fighting between John and his 3 yr old brother.  Jacob will NOT be quiet and his incessant talking drives John CRAZY!  John is completely addicted to video games due to the fact that it repeats.  He loves things that repeat.  However, he can NOT concentrate when people are talking within his vicinity.  When he gets in the car, he will complain that the radio is too loud.  It is not.  It is to HIM, though.  He also has problems with restaurants, etc. with the noise levels.  That is when he will have disruptive behavior.

Based on what I know, does it sound to me like he has autism?  Sure, it does.  However, there is such a difference of opinions on this subject and if my pediatric neurologist does not agree.......then I guess it's true, right?  John is not autistic?  It's funny, b/c as soon as I contacted the Hershey's Feeding Clinic, I was asked immediately if John was autistic. I told them that he had not yet been diagnosed and we shall leave it at that. It's always possible that John is just developmentally delayed. He has great eye contact and will communicate.....so folks discount autism as being a possibility. Ok, then tell me what it IS so that I can help my son!!!

I have John set up with his IEP for our local public school system. There are 13 categories that your child MUST fall into in order to receive specially designed instruction. He falls into speech (obviously) and learning disability (the psychologist thinks he has APD, remember?). I will meet with the IEP committee in a few weeks to discuss the exact plan for John's education.

There is SO MUCH that we can do for our children, but you have to remain actively involved in their lives and seek out education and medical assistance! I have had so many people ask me if John has a medical card. I still don't understand what that is about, but I have a funny feeling that I will find out soon enough. Just think....if I had been that parent that listened to my pediatrician and waited until it was a problem....think of where we would be NOW! John would be MUCH MORE DELAYED in SEVERAL aspects of his life! We saw his pediatrician in February 2012 and he watched John spinning around next to the wall and listened about John's selective eating.......he now thinks that John MIGHT BE AUTISTIC......BUT.....let's wait and see how he performs in the classroom first! REALLY?!? Let him fail first?! Luckily, I have pursued this YEARS before now and John is set up with an IEP to help him to transition into the classroom and be taught in a specific manner!

Research Research RESEARCH!

Before you venture out into the retail environment....whether it is to shop online or shop outside of your home....RESEARCH!  I have just learned about a rebate that I thought was okay to mention online.  There is actually small print stating that we are not allowed to re-transmit this information online to alert any of our friends, neighbors, co-workers, etc.  This is an awesome rebate, too!

My best suggestion would be to always use your search engine when trying to save money.  This rebate, that we dare not speak its name, is definitely available by search engine!  Make a list of items that you love to use around the house.  Go to their website.  Call their customer service department. Ask for coupons....nicely, please!  I have no shame in asking.  I am not afraid of hearing, "No, we do not offer coupons through the mail anymore."  I might just hear, "Sure we offer coupons!  What is your address?"  Watch your local grocery ads for awesome sales!  Check on www.savingstar.com for money to be deposited into your account for using your loyalty card when you check out on certain items (yes, you can use it in addition to store coupons, manufacturer coupons, catalinas, and special "instant" savings offers!).  So what do you do after that?  Save your receipt!  You may just want to save your UPCs as well!  Check from time to time online for rebates for that item!  Rebates usually go on for a period of time, so you have time to get your information together.  There are some blogs that will encourage you to set aside your rebate money for a vacation, shopping trip, etc.  Think about it!  This is money that you would not have had otherwise!  Pretty awesome!

My next piece of advice is to "like" the item's Facebook and Twitter pages.  You never know when a great coupon or sample might be released that you could use!  It will show up in your newsfeed and you will be one of the first to know about it!

I love to go to www.vocalpoint.com and www.smiley360.com and www.bzzagent.com to try new products.  If you like to have parties, you can also sign up at www.houseparty.com and they have the coolest items in party package sizes for you AND your friends to try when new things come out!  RESEARCH, PEOPLE!  =)

What did I do today?

Well, I received 2 boxes of Pull-ups from www.amazon.com.  I place my orders through "subscribe and save" and sometimes, it ends up cheaper than purchasing with a coupon at Walmart!

I have spent most of my day online taking my free computer class for part of my Act 48 hours to maintain my teaching license.  This class is worth 15 hours and it is FREE!  I just look through my state department of education website to locate the free classes.  I need 178 hours before this class!  I am a little aggravated that part of our assignments include posting a discussion topic on a forum.  Then, we are required to respond to another person's topic.  The other people taking the class are simply quoting things that we were required to read!  WHAT am I going to respond to?  They do not have an opinion!  UGH!

Sick =(

I was at CVS pharmacy the night before last night.  I was trying to get my prescription filled when a man approached me to wait for his pick-up.  Instead of standing behind me and giving me some personal space, he stood beside me barking like a dog!  Then, he proceeded to tell folks (who were being polite and waiting BEHIND me) all about some kid that sneezed in HIS face to make HIM sick!  Really?!?

Guess what?!  I've been sick since last night!  Thank you Mr. Man.  I appreciate that so much.  Exactly HOW did I deserve to receive this man's karma?!  I have been lethargic, had chest discomfort, shallow breathing, and coughing.  Yes, I have had my flu shot around October 2011.

My children have both had the stomach virus that is going around, but this is definitely not that.  They had theirs for about 1 week each.  It's a nasty virus, y'all!

Update About My Husband's "Ticker"

My husband completed his heart catheterization and 12 weeks of cardiac rehab afterwards.  His nurses were so glad to see him graduate!  He was such a pain to them LOL!  A good pain!  He graduated from the cardiac rehab program in Nov 2011.

At the beginning of Dec 2011, he began to experience a chest pain that reminded him of the pain from Aug 2011 (which was a 90% widow-maker blockage.....meaning: blockage at the top of the heart that allowed only 5 min of response time to get help before he would die).  This chest pain was described as a pain that was high up in his chest and made him feel like he was going to vomit.  He usually experienced this after going up the stairs.

Since my husband already had a cardiologist following his progress, we returned immediately to him on Dec 8, 2011.  He wanted to immediately hospitalize him, but my husband is a busybody and wanted to spend time with his young sons instead.  He was admitted for his second heart catheterization on Dec 12, 2011.  Guess what they found?  Yep, the same 90% widow-maker blockage!  The stent had failed.  We had a choice of stenting the stent or single bypass using the mammary vessel near the heart.  I spent the entire weekend researching this before he ever had the heart cath.  There was no real evidence showing that stenting a stent was 100% successful.  The alternative of a single bypass terrified me based on his response to the stent in August.  He had  had a severe vasovagal episode that involved Atropine to revive him!  My husband and I had made a joint decision BEFORE he underwent the heart cath.  I was/am his voice when he is under any anesthesia or medication.  I speak FOR him when he can not do so.  We agreed that he would have the single heart bypass in order to extend the years that he could spend with our children and me.

Dec 13, 2011.....We were in the Open Heart Unit waiting for his heart surgeon.....waiting......waiting......waiting.....finally told at 2p that he would be having surgery, but his surgeon would be a different surgeon.  It started around 2-3p and I was finally called around 5p.  Since I had researched online, my FIRST question was, "Was his heart on or off of the machine?"  The complications are very different for each.  His heart was ON machine for 14 minutes.  This means that the surgeon had stopped my husband's heart.  That devastates me at the thought.  The heart and lungs were "controlled" by a machine during this time.  This makes it easier for the surgeon to do the bypass with the heart being STILL.  What was very odd to me was this RUSH that I had in the waiting area.  I was relaxed (as much as I could be) and suddenly....there were all of these moments, literally, RUSHING through my head!  These were the happiest moments of our lives!  The odd part is that they didn't feel like "my" thoughts.  I honestly believe to this day that they were my husband's thoughts while his heart was still!  I got extremely nervous after that, but then I got the call saying that he was in the Critical Care Unit.  Ahhh finally!  I can't begin to tell you how relieved I was!  However, nothing could've prepared me for seeing my husband covered in tubes and a machine still breathing for him.  I kept brushing my fingers through his hair, touching his hand, rubbing his cheeks, talking to him, etc.  I kept trying to get him to wake up enough or get mad enough to start breathing on his own.  I wanted to be there when he woke up so that he would not panic from the breathing tube.

I was told at 6p that they would be closing Critical Care to the families while the nurses changed shifts until 8p.  I drove an hour back to our house (through dark mountain roads) to eat, bathe, check on the children (and my oldest that is 20 yrs old and now raising them in my absence), etc.  I called the CCU at 10p to check on him.  I informed them that I was about to leave my house and explained the long drive.  I was told that I was not allowed back in once I had left the hospital until....9a!  Good information to have had!  Of course, he woke up WITHOUT ME THERE!  I still feel guilty from leaving the hospital.  That was a stupid rule.  They should welcome family for the recovery of their patients at any time!  I understand the shift change....just not the rest.

Was the breathing tube the worst part?  Ummm NO.  He had 3 chest tubes that eventually had to be removed.  His RN removed those approx 2 days after the surgery.  She warned me that I might have to scrape him off of the ceiling.  Here is a big, strong, outdoorsy guy that I can't picture EVER being in pain.....yea right!  This little woman practically (not really) put her foot on him and grabbed all 3 chest tubes and YANKED them out of him.......these 1" diameter garden hose looking tubes!  All at ONE TIME!  I had him holding my hand and he dug those "man" nails down into my  hand OMG I just let him dig right in and he actually scarred it!  I kept letting him dig in.  I can't imagine the pain he felt!  She had given him morphine 15 min prior, too!