Just us... nothing more.

Welcome to my blog.

I am a happily married mother of a ten year old, beautiful and talented neuro-typical daughter and a super intelligent, handsome 15 year old son diagnosed with Autism Spectrum Disorder (ASD) among many other things. Life tends to be a struggle in our house, but every small win is a big victory.  This blog is going to be a log of our life, the ins, outs, ups and downs associated with life with a special needs child.

First, about me.  I married my husband Jeff 16 1/2 years ago after being engaged for 2 1/2 years.  Yes we have been together a long time and we still love each other very much.   I am a stay at home mom of my two beautiful children.  I know this sounds odd since my children are 10 and 15, but the needs of my son do not currently allow me to go to work.  I have at least one phone call daily from him or someone else at his high school, at least 2-3 appointments per week and several days that I am needed at my son's school in some way.  Employers simply do not appreciate this amount of personal time needed.  I do work at a sub-part time job when I can.  My children come first though.  I refuse to apologize for this.

My husband is in the Air Force and is deployed a LOT.  Consequently I am for all intents and purposes a single mom most of the time.  He tries to support me from wherever in the world he is but that is not always possible.  I know he is with me though, even if he can't be here.  Unfortunately this means, everything (the entire world) is on my shoulders.

My daughter Kassidie,  is a gorgeous ten year old with many talents and high intelligence.  She is a straight A, 5th grade student with a reading level near college level already.  She plays Piano and is learning that at an unbelievable rate.  She had her first recital on December 2 and played "No place like home for the holidays" in honor of her daddy being home on a 3 week visit.  This from a child who had only been taking lessons for 7 months.  She is currently playing Beethoven's "Fur Elise" (2 levels above where she should be) after only 2 lessons on the song.  She is also in girl scouts and loves it.  She loves art, and wants to be a singing doctor in the Air Force when she grows up.  She adores music, sings pretty well and is in LOOOOVVVVE with Harry Styles from 1 Direction.  She loves Taylor Swift, Carrie Underwood, Megan Trainor, and pretty much anything else that is fun, honest, and she can sing to... She isn't really bound by any particular genre.  She is an Anime FREAK and still loves disney shows aimed at Teens and Tweens like Liz and Maddie, Girl meets world (we watch this one together), and Sam and Cat.  She has read almost every warrior book written and is working on the last few.  She is loving and caring and so darn smart!  She amazes me daily!

Now on to my son.  Jeffrey is a handsome fifteen year old with many interests and abilities to go along with his many diagnoses.  To start, he has severe combination type (medication resistant) ADHD, ODD, OCD, mood disorder, panic disorder, sensory integration disorder, GERD, IBS-C, Encopresis, and the dreaded ASD.  Diagnosed at 3 with the ADHD and put on medication even though I really didn't want to, because of our many emergency room visits for head wounds sustained by his non stop climbing up things.... literally the walls, the furniture, etc.  We have tried every single ADHD medication on the market except Daytrana (because his skin sensitivity will not tolerate the patch) and none of them work long term so we have to change his medicine around frequently.  Jeffrey was diagnosed at age 6 1/2 with Aspergers.  We were told he had high functioning Autism (called Aspergers) with many traits of PDD-NOS.  This meant absolutely nothing to me.... I had no idea what it was.  I did a LOT of research, and finally arrived at a fairly fundamental knowledge.  However, I always felt that his Aspergers diagnosis was not entirely correct, I mean, yeah he is super intelligent and very very socially awkward but the amount of meltdowns, stims, and self injurious behavior were not typical of those as high functioning as Aspergers.  I fought the schools he attended for an IEP but nobody would listen to me because he was so academically advanced.  It wasn't until 7th grade (halfway through the school year) that I finally got someone to take notice.  His grades were dropping, he would get horrible stomach aches and headaches at school,  to the point of vomiting and would need to come home.  He was attempting to avoid going to classes or would try to get out of class frequently.  They finally gave me a 504 plan (a complete joke of a 504 with only 2 minor accommodations) I am sure this was just to shut me up.  We even had a teacher refuse to allow Jeffrey to use the restroom (because he didn't like how needy JJ was) to the point of JJ wetting his pants in class.  Of course this just intensified the bullying he was receiving from the other students.  Then halfway through the school year in 8th grade, Jeffrey appeared at our front door in the middle of the school day.  It seems he walked out of school, through a door with a security camera posted at it, and walked home.  He walked a mile and a half, in 20 degree weather with snow falling like crazy... it took him an hour and a half and he was frozen by the time he got home.  He made up a big extravagant story about a fire in his science class.  Of course I called the school and found out that there was no fire.... but they had NO idea JJ had left the building.  JJ got suspended from school (fine with me, consequences for his actions and all) and I threw a fit about him leaving and them not noticing even though there were cameras and he didn't make it to his next class.  They made up excuses and pointed fingers everywhere but at themselves and I made the decision that if my child wasn't being watched in their building, and could leave without anyone noticing, that he was better off at home and pulled him out and homeschooled him.  Thanks to MY schooling, he scored at college level on his Tera Nova Cat 6 tests!  We elected for him to go back to school for high school (we had daily fights over school work at home because I am MOM not a teacher) and we believed he needed the socialization that he would get in the school environment.  WHAT A DISASTER!  Long story short, he was suspended 5 days in school and 37 days out of school in the first HALF of the year.  His principal only recognizes disabilities that he can see, if he cant see them, you are just a bad kid.  He tried to have JJ expelled.  Instead, the superintendent put him on home bound instruction.  THIS IS A JOKE OF A PROGRAM!  He got NO education the last half of the year.  NONE.  Causing him to fail his algebra SOL.  Well, since the sols are nothing more than a report card for the school, I guess they FAIL.  Through all of this, I obtained a bull dog of an advocate, and with her help, we FINALLY got him an IEP!  SUCCESS!  I worked long and hard through the second half of the school year and most of the summer but we had an IEP in place for his return to school in September.  Now, he is still struggling, but he is doing much better.  He has one teacher Ms. West, that is his security blanket, and advocate at school.  Without her, he wouldn't be doing as well as he is and he would probably not make it through a single school day.

Thanks to our advocate, we found out about a resource that we should have known about 9 years ago when we first got Jeffrey's Aspergers diagnosis.  It seems that the Naval hospital here has a pediatric neuro-developmental clinic (AUTISM SPECIALISTS)!  WHAT?  Are you kidding me?  Where has this been for the last 9 years?!?!    We began paperwork in May, (this required many people including teachers and other doctors to fill out paperwork)  finally got it all returned to me and turned into the clinic in September and had to wait MONTHS for an appointment.  We finally had that appointment on Tuesday.

So Tuesday comes around, and we embark on this new chapter.... I wake up after only an hour of sleep (I never sleep anymore) nervous, excited, unsure about what this appointment would mean but hopeful for the future for my son.  So we get ready and off we go.  We travel the 45 minutes to the hospital where this specialty clinic is located, get lost in the maze like building and arrive to the appointment.... ON TIME!  We get checked in and Jeffrey is nervous but is being pretty outgoing with the nursing staff.  We are taken to a room and we wait.  In walks the doctor and a resident, we are asked if it is ok for the resident to be there and we agree.  Our 2 hour appointment was very informative and we left there with ME having a much better understanding of some of Jeffrey's behaviors and how they affect him, how much he DOESN'T like doing some of the things he does but is compelled to do them.  It made me much more understanding and it's easier to deal with those behaviors.  Also, the doc wants Jeffrey to begin ABA therapy, which I had been told he is too old for but now know that some adults are in ABA and it helps.  I am also going to call another IEP meeting and have some things added to his IEP.   All of this is good news... but then came the news that turned my world upside down.

Although I have always felt like Jeffrey didn't fit the Aspergers diagnosis completely, and although I know that he needs constant supervision and has many many more things going on than high functioning Autism, it was still a blow when I had an autism specialist confirm it.  It seems that there is a reason they changed Autism diagnoses from the previous categories of classic autism, PDD-NOS, and Aspergers to Autism Spectrum Disorder.   The scoring that places you into a specific category is kind of flawed and while you may fit into more than one category, if you get a slightly higher score in one category than another, that is the diagnosis you get, even if it doesn't completely fit.  Jeffrey is not "Aspergers".  Jeffrey is lower functioning than that.  He has super intelligence, like those with Aspergers, but he doesn't have the control that this particular category is known for.  Jeffrey is more in the middle of the spectrum.  This information just confirms what I have always known but nobody has ever said to me before.  I needed the confirmation, to know I wasn't just imagining the problems, but getting it... hurt.  I know that a child with Aspergers has a very high chance of fully functioning in society without a TON of help but that the more severe, the less high functioning, those kids.... have a much harder time.

I have the same wants and desires for my children as any other parent, well, any other good parent does.  I want my kids to grow up, be happy, be the person they are meant to be... I want them to be productive members of society with full and fulfilliing lives.  I understand that this is going to be much more challenging for my son and this is witnessed by the difficulties he faces daily in high school... or any place that isn't home.


So for now, I will begin the triathalon of ABA.  I know this is going to be a challenge because he is 15, we have tricare, and most if not all places around here that offer ABA are on waiting lists for new clients.  I am also going to call another IEP meeting and have the new accommodations that the doc recommended, added.  He says that the "free and appropriate education in the least restrictive environment" is not appropriate for JJ.  Least restrictive is a problem for him.  He needs MORE restrictive than what high school provides.  He also said the Jeffrey does not need to be on the Honor Diploma tract.  He needs to be on a regular diploma tract with honors classes where appropriate.  He would like Jeffrey to receive vocational training and a transition program as well.  I am going to put him into some social skills therapy groups and attempt to get him all the help I can.

With that said, thank you for reading, and going along on this journey with us.  Without the small group of friends and family that I have surrounded myself with, I would have lost my mind a long time ago.  So, to those people I say thank you.  Thank you for being there with us, supporting us, and most importantly, for accepting Jeffrey the way he is, quirks, behavioral issues and all... and loving him anyway.  David Kilgore, Mike Rutkowski, Chasity Hurt, Stacy Bacome, Amanda Pedigo.  My mom Terrie DeWitt and my mother in law Loreane Sheets.  My sister Faith Johns.  We love you all!