Preface: So, my child does NOT step out of his comfort zone.. EVER. It really takes a LOT to get him to do that.
This weekend.... we hauled our behinds, all our clothes and personal hygiene stuff and some favorite snacks to Myrtle Beach. We spent hours in a car which is usually not a good thing for JJ. This time, he did magnificently! The kids did not argue, did not fight, did not bug us a million times about how much longer... further.... when will we get there. So, the trip began well. We set down some ground rules.
1. NO thinking about IEPs
2. NO thinking about Dr. appts
3. NO thinking about upcoming moves
4. NO thinking about Dad being gone
5. NO thinking about lost jobs
6. NO thinking about job searches
7. NO thinking about school or homework
8. YES to fun
So, we had planned out our day on Sunday but for Saturday after all of our traveling, we had intended to find a redbox, rent a movie, go for a swim and sit in the hot tub, then watch the movie as a family and go to bed. We arrive at our hotel, check in and are given a scan card that we are told is for the "brown box" it's like redbox but free for the guests of the hotel. WIN. That accomplished one of the things we wanted to do, was free, and didn't require us going back out. We rented "The Duff" (cute movie) and went to our room put down our stuff and changed into our swimsuits. Now, where our room was, we had to go out the door, down 15 floors, into another building and down a long hallway before entering PARADISE! This "pool room" had a huge pool, an indoor lazy river with a small pool in the middle, a "cool tub' (like a hot tub but cooler temp than the pool) and a HOT tub! The kids jumped in the lazy river, Dave and I... the hot tub. I did get out and play with the kids in the lazy river some, but overall I spent my time relaxing in the heated gloriousness of the hot tub. When we finally got out, and back to our room it was around 12. Change into PJs, pop some salted caramel popcorn, and relax with the movie. JJ crashed out around 1 (missing the end of the movie) and the rest of us finished it out. Then bedtime at 1:45.
I woke up Sunday morning to the sound of my alarm going off at 9:30. I got up and did my hair and makeup before waking everyone else. We then went to Krispy Kreme for donuts and hot chocolate since it was so COLD. Then off to start our RIPLEY'S Day.
Ripley's has 5 attractions in Myrtle Beach. We did 4 of them. We started with the 5D theater... it was cute 2 movies took less than 10 minutes. While cute... not worth the price. Next was the mirror maze. In the words of Jeffrey, can you really call it a maze if there is no "fake" areas for you to get wrong and wander into? It took us 5 minutes to run it forward AND backwards. ALSO not worth the price of admission. After those 2 disappointments, we went into a few gift shops, bought little goodies for friends and family, and then went to Ripley's ODD-itorium. That took a few hours and was a LOT of fun. Super interesting. It ended in a game room where we played for about 15 minutes before walking back to the car and heading to the Aquarium.
OMG the Aquarium. Talk about FUN! We got there at 4:00, left at 7:30. We spent HOURS learning about the aquatic life and getting to interact with it! Here is where JJ's adventure begins... remember that preface? Ok here goes. JJ talked to a stranger (one of the employees running ray bay where he learned about the sting Rays. Then he TOUCHED ONE! After that we went to learn about the jelly fish where NOBODY but Dave could be talked into touching one of those! Then back to ray bay to watch the rays be fed and then get to pet them some more! Then we went through the HUGE tank where sharks and fish and rays swim around on both sides of you and over your head! AMAZING! Getting to view these creatures in ways most people will never get to see was truly worth the price to get through the doors. Then we spent some time talking to a marine biologist (Stephanie) who LOVES her job there. She talked about all of the animals like they were family! We learned so much. While Kassi, Dave and I talked to her, JJ who was feeling a little overwhelmed, stayed outside the tank (he had already walked through once) and was looking around at some other animals when he saw the same employee (John) standing by the horseshoe crab/shark interaction exhibit. Somehow, John talked JJ into doing what I had been unable to talk him into.... he pet the horseshoe crabs AND a shark!
So, all that done, and being hungry and tired, we went to cheeseburger in paradise for dinner. It was ok. Not what I remember. We left there and went back to hotel. Arrived there at 9, changed again and OFF TO THE POOL! Around 11 JJ spotted a 14 year old girl (the only one around that was his age) and went up to her and talked to her! HIGH FIVE JJ. He initiated conversation with a teenager... on his own! He even got her to go to the lazy river with him where they spent an hour floating and talking before the pool closed and we all had to go. He even exchanged phone numbers with Anna!
I am so proud of my son. He did so great this weekend! I call that a major win!! Take that Autism!
Tuesday, January 19, 2016
Friday, January 15, 2016
Out to lunch...
So, per my best friend Dave, we all need a break.
What does this mean? Well, this means packing a suitcase full of clothes and personal hygiene things, packing bags of activities for the kids for a car trip, booking a hotel and taking a long car ride. Where are we going? Why, to Myrtle Beach of course! What else does one do in January but go to the beach! Don't we live near about 50 beaches? Well yes, since you mentioned it, we do. But these beaches here, they are well... HERE. We are getting away. We need to reset. So, we have booked a hotel with an indoor pool, an indoor lazy river, life size checkers and chess and lots of space. We have purchased tickets to go see some of Jeffrey's favorite things, RIPLEY'S BELIEVE IT OR NOT! Turns out, there are 5 Ripley's attractions there. The aquarium which sounds AMAZING, the oddities museum, a 5D moving theatre, a mirror maze, and a haunted house. I can NOT do haunted houses, and JJ would lose it in the mirror maze. So, we are doing the Aquarium, the oddities museum, and the theatre. We plan to eat at Cheeseburger in Paradise and explore the area with NO stress. NO thinking about the upcoming move, NO thinking about doctor appointments, or IEPs or ABA therapy. We are just going to enjoy each other's company and let it all de-stress us. Going off the grid until Monday evening or so. All I am hoping for at this moment, is that JJ can handle all the being out in public without any meltdowns.
Sidenote: Really wish Turbo was already certified as an Emotional Support Dog so she could go with us. Oh well, we are getting there and when her training is complete, it will all be worth it!
What does this mean? Well, this means packing a suitcase full of clothes and personal hygiene things, packing bags of activities for the kids for a car trip, booking a hotel and taking a long car ride. Where are we going? Why, to Myrtle Beach of course! What else does one do in January but go to the beach! Don't we live near about 50 beaches? Well yes, since you mentioned it, we do. But these beaches here, they are well... HERE. We are getting away. We need to reset. So, we have booked a hotel with an indoor pool, an indoor lazy river, life size checkers and chess and lots of space. We have purchased tickets to go see some of Jeffrey's favorite things, RIPLEY'S BELIEVE IT OR NOT! Turns out, there are 5 Ripley's attractions there. The aquarium which sounds AMAZING, the oddities museum, a 5D moving theatre, a mirror maze, and a haunted house. I can NOT do haunted houses, and JJ would lose it in the mirror maze. So, we are doing the Aquarium, the oddities museum, and the theatre. We plan to eat at Cheeseburger in Paradise and explore the area with NO stress. NO thinking about the upcoming move, NO thinking about doctor appointments, or IEPs or ABA therapy. We are just going to enjoy each other's company and let it all de-stress us. Going off the grid until Monday evening or so. All I am hoping for at this moment, is that JJ can handle all the being out in public without any meltdowns.
Sidenote: Really wish Turbo was already certified as an Emotional Support Dog so she could go with us. Oh well, we are getting there and when her training is complete, it will all be worth it!
Defeat
I just cant today.
Just as I was getting ready to go to sleep last night (finally feeling as though I could at 10:30 at night) I got an email from Jeff. This is the email I have been waiting for. Unfortunately it left me unable to sleep... yet again.
Last year we were notified that we would have to PCS (move) when Jeff returns from Korea. We immediately appealed that decision based on what we are going through with Jeffrey right now. It required a ton of paperwork from several sources, and letters from his doctors. His doctors have written that continuity of care is extremely important for him right now and that it would be extremely detrimental to his mental health for us to move at this point. Our first appeal was denied. Apparently, the medical team at the personnel office assigned a medical team to assess our situation and they determined that continuity of care is NOT important for us. WOW. Ok, so basically I am hearing that this group of "medical professionals" (I use that term loosely) who doesn't know my child, our family, the history of what Jeffrey has gone through, or anything else about us, has overridden what his doctors who have worked with him for 5 years have determined. I guess that while they know nothing, they think they know everything!
So, we consulted a commander (a neutral party) and we got stronger worded letters on his advice, and resubmitted the package for appeal. We have been waiting on the decision for a few months now. That decision came through last night.
DENIED. Again.
So, when Jeff returns, we have to prepare our house for sale, and put it on the market. We have to figure out how we are supposed to move to another location with a child who has had several meltdowns over the last few days over just HEARING that we might have to move at his doctors appointment on Tuesday. We have to figure out how the kids and I can stay here through the end of the school year while Jeff goes ahead to the new base. We have to find a new home in the new area, and new doctors as well. Not to mention, the new school that Jeffrey will be attending, does not have to follow his IEP that we worked so hard on. They get to do another child study, and the process begins again. They can decide, if they want to, that he does not need an IEP like all of his previous schools and then we lose everything we worked so hard for. We are supposed to start ABA therapy, which seems pointless to me at this moment, because he will be starting on a new therapy just in time to get attached to that therapist too, and then lose them. So much to think about and do, and this is the short list.
In addition to all of that, I am losing my entire support system. I will be in a new area, knowing nothing, with no friends or family around to help out when Jeff is inevitably deployed.... again. Kassidie will be losing her few friends and her amazing Piano teacher.
I currently feel extremely overwhelmed, and I feel as if the weight of the world is pushing down on my shoulders and my knees are buckling. I am strong but am I strong enough to handle all of this?
If anyone needs me, I will be in my bed, crying... again. But at least for the moment, don't need me. I have nothing to give right now. Unless you are a doctors office or my child's school, I will not answer my phone today. Sorry but I just can't.
Just as I was getting ready to go to sleep last night (finally feeling as though I could at 10:30 at night) I got an email from Jeff. This is the email I have been waiting for. Unfortunately it left me unable to sleep... yet again.
Last year we were notified that we would have to PCS (move) when Jeff returns from Korea. We immediately appealed that decision based on what we are going through with Jeffrey right now. It required a ton of paperwork from several sources, and letters from his doctors. His doctors have written that continuity of care is extremely important for him right now and that it would be extremely detrimental to his mental health for us to move at this point. Our first appeal was denied. Apparently, the medical team at the personnel office assigned a medical team to assess our situation and they determined that continuity of care is NOT important for us. WOW. Ok, so basically I am hearing that this group of "medical professionals" (I use that term loosely) who doesn't know my child, our family, the history of what Jeffrey has gone through, or anything else about us, has overridden what his doctors who have worked with him for 5 years have determined. I guess that while they know nothing, they think they know everything!
So, we consulted a commander (a neutral party) and we got stronger worded letters on his advice, and resubmitted the package for appeal. We have been waiting on the decision for a few months now. That decision came through last night.
DENIED. Again.
So, when Jeff returns, we have to prepare our house for sale, and put it on the market. We have to figure out how we are supposed to move to another location with a child who has had several meltdowns over the last few days over just HEARING that we might have to move at his doctors appointment on Tuesday. We have to figure out how the kids and I can stay here through the end of the school year while Jeff goes ahead to the new base. We have to find a new home in the new area, and new doctors as well. Not to mention, the new school that Jeffrey will be attending, does not have to follow his IEP that we worked so hard on. They get to do another child study, and the process begins again. They can decide, if they want to, that he does not need an IEP like all of his previous schools and then we lose everything we worked so hard for. We are supposed to start ABA therapy, which seems pointless to me at this moment, because he will be starting on a new therapy just in time to get attached to that therapist too, and then lose them. So much to think about and do, and this is the short list.
In addition to all of that, I am losing my entire support system. I will be in a new area, knowing nothing, with no friends or family around to help out when Jeff is inevitably deployed.... again. Kassidie will be losing her few friends and her amazing Piano teacher.
I currently feel extremely overwhelmed, and I feel as if the weight of the world is pushing down on my shoulders and my knees are buckling. I am strong but am I strong enough to handle all of this?
If anyone needs me, I will be in my bed, crying... again. But at least for the moment, don't need me. I have nothing to give right now. Unless you are a doctors office or my child's school, I will not answer my phone today. Sorry but I just can't.
Thursday, January 14, 2016
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!
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!
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