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!