OK -- so now we are up to the public schooling years.. but, before I start into that.. there is one more thing I want to mention that I remembered after the last post of Andrew's early years... When he was still in his baby phase, and drinking from the bottle, he would study the pictures on the bottle. I have never seen this in any other infant I have ever been around - EVER. The whole time he was drinking and even after he was done.. he would look intently at the pictures on his bottle. He would turn the bottle from time to time to see the rest of the pictures. I thought this was a little odd.. but not in a bad kind of way.. in an amazed kind of way. ;-)
OK-- so now onto his years in the public school system.
Andrew did get accepted into the Pre-K program in the public school system in our county (Thanks Goodness!). We got the "home visit" from his teacher a few weeks before school started. She was a nice lady and I thought she would be good for Andrew in his first year of school. I explained to her, as much as I could, about Andrew during that visit -- she took her notes and gave him a few little "tests" of her own. When I told her that he could read.. of course she didn't believe me, so she tested him.. she had a few books in her "bag of tricks" that she had brought with her, so she pulled one out and handed it to him. It was one of those "Dick and Jane" type books.. you know the type... "See Spot run. See Jane run. See Dick run.". He read it with no problem. She was impressed, but I guess she wanted to see just how much he could read because she took another book from her bag and handed it to him. This book was much harder. It had bigger words in it and it had quite a few compound words. It also had more of a "story" to it. He read this one with no problem as well. She was completely impressed after this. I told her what his Pre-school teacher had said about having him tested for his IQ in the public school system, and she said that while they normally don't test kids this young for something like that, to give her some time to get to know Andrew in the class setting and we would go from there. That was fine with me.
The first day of school came.. and since I was the one taking him and picking him up everyday, I got to see first hand what my MIL dealt with the previous year. For the first several weeks Andrew would refuse to even walk into the classroom.. I would have to force him. Imagine for a minute, trying to put a cat into a bathtub full of water.. Yep.. this pretty much explains Andrew's reaction to being forced into this chaotic room full of unpredictable, loud kids. I thought he was just being difficult, so I forced him anyway. It broke my heart to force him.. but I did it, because he HAD to go to school ... right??? He did everything to try to keep from being forced into that room.. he stood outside he door, he ran from me, he grabbed onto the door jam, he screamed and cried... but I made him go in there anyway. I felt really bad for him, but I was helping him by doing this .. right??? After a few weeks, he did better about going in the room by himself. I was relieved.. because with him fighting me, I left the school crying everyday for having to force him into a situation he wasn't comfortable with.
His teacher would report to me quite often throughout that year that Andrew had difficulties with several things. He wouldn't write or even try to write his name or even color for that matter. He couldn't use scissors. When they had fun activities, like spraying shaving cream on the tables for them to draw and write their names in.. Andrew would refuse to participate. He would stand on the sidelines and watch the other children, but he wouldn't put his hands in it. If she took his hands and put them in there anyway.. he completely freaked out. During group time.. Andrew stayed as far away from the "group" as he could get without leaving the room. When out on the playground.. he would stay as far away from all the kids as possible. He would look at them and watch them .. but wouldn't engage in "play" with them at all.
At some point during the year, his teacher started letting him read to the class and I believe that this helped him to feel more confident and included. He really enjoyed this part of the day. Towards the end of the year, he had managed to make a couple of friends.. but the "play" had to be on his terms or he would disengage.
I kept asking her, throughout the course of the year, to test him.. because while he had all these problems, he was still way ahead of his class with reading and math. She finally agreed towards the end of the year to submit the paperwork to try to get him tested, but wanted me to understand that to justify this kind of test, they had to "come up with something wrong with him". The things they "came up with" I agreed to, because they were accurate. She wanted him tested for Speech.. because while he was using more words and actually "trying" to communicate, he was actually talking in circles. What I mean by this is.. Andrew would start a thought, stop in the middle of that thought, start another thought, stop in the middle, start another thought, stop in the middle.. then finish the first thought, then finish the last thought, then finish the middle thought. She also wanted him tested for Occupational Therapy because of his difficulties with Fine Motor Skills (writing, cutting, etc.). It took til the end of the year before they agreed to test him.. but they did agree that they would give him a full Psychological Evaluation with IQ test over the summer.
During the school year Andrew was referred for a Speech Evaluation -- on the Articulation Screener - his performance was typical to those of peers his age. He was also given the Expressive One-Word Picture Vocabulary Test (EOWPVT) and the Preschool Language Scale-3 (PLS-3) which were used to assess his language skills. On the EOWPVT, his performance was invalid. A basal of 8 consecutive correct responses was not established. His performance on the PLS-3 revealed a standard score of 78 and an age equivalent of 4 years, 2 months which indicated mild delays when compared to his chronological age of 5 years, 7 months. Andrew's strengths were understanding descriptive , time & quantity concepts, adding and subtracting numbers to 5, using prepositions and pronouns, and answering "when" questions. His weaknesses were identifying pictures, repeating sentences, defining words, naming animals, answering questions logically, describing procedures, using regular and irregular past tense verbs, indicating body parts such as wrist, ankle, and heel, building sentences, using comparative/superlatives and retelling stories.
Andrew was asked various questions on the test and his responses were as follows:
SLP: "Why do we brush our teeth?"
Andrew demonstrated brushing his teeth and said, "A brush to get toothpaste"
SLP: "Why do you wear shoes?"
Andrew: " Because I got new spiderman ones."
SLP: "Why do you put ice in your drink?"
Andrew: "Kool-aid, tea, and Dr. Pepper."
SLP: "What is a banana?"
Andrew: "an apple and grapes"
SLP: "What is a piano?"
Andrew: "a guitar and a xylophone"
That summer we were called in for 2 separate sessions of the Psychological Evaluation with the BOE. In addition to the Speech Eval. and the OT Eval., he had already had previously in the school year; these are the tests they administered during the course of the evaluation: Standardized Procedures: Stanford Binet Intelligence Scales -5th Edition (SB5), Kaufman Survey of Early Academic & Language Skills, Bracken Basic Concept Scale - Revised, Developmental Test of Visual Motor Integration (VMI), Diagnostic Achievement Battery - 3rd Edition (DAB-3),Woodcock-Johnson-III - Tests of Achievement-Form B, and Gilliam Asperger's Disorder Scale; Informal Procedures: Play-Based Assessment, Parent-Child Interaction, Teacher Observations.
On the evaluation itself.. it states, and I quote, that "On this preschool developmental assessment, any findings must be considered preliminary and baseline. These results should be interpreted in terms of developmental progress, and relative strengths and weaknesses, rather than absolute levels of functioning."
We had the meeting to go over everything at the beginning of his Kindergarten year. They did go over all of the tests and scores with me, (to be quite honest -- I didn't really understand most of it at the time), and what they said was that basically he scored genius levels in Reading and Math, but scored low with Social abilities and Verbal abilities. The LEA in the meeting kept telling me that she had never seen a child this young that was this intelligent. They went on to say that (and I quote) "We did a preliminary test for Asperger's Disorder, which he scored borderline on." I asked what that was (because I had never heard of it before). Their response to me was "Well, if there is going to be something wrong with your child, trust me, you want it to be this!"
Wrong? Something is Wrong?? With MY child??
They said something was wrong, and I am the type of person/mom that ... well, if there is something wrong.. Let's fix it! How do we fix it?! So I questioned them again... I said, " You stated that you only gave him a preliminary test for this ... Asperger's ... Right???"
"Well, Yes ma'am.. that's right!" they said.
"Oh!.. OK, well then do I need to take him and have him fully tested for this then?", I asked.
Their response to me was... "OH! NO!!!! (while shaking their heads vigorously at the same time) WHAT EVER YOU DO ... DON'T DO THAT!!!"
"Let's just take a wait and see approach for now....." they continued.
This confused me quite a bit... at first they made it sound just serious enough to make me question it, then they said that there was something wrong, and now they are telling me to do nothing about it... hmmmmph... I don't think so Tim...
I went home that night and looked up Asperger's Disorder on the internet, and what I found shocked me, to say the least! From what I read.. there is no way, in MY mind, that you can be borderline for something like this. It's AUTISM... High-functioning Autism, but Autism none-the-less.
So the next day, I call Andrew's pediatrician.. I spoke directly to him and told him what had happened and what was said at the meeting the day before -- he agreed with me that you can't be borderline for something like this -- you either have it -- or you don't! He made us an appointment for the next day.
We went in the next day with paperwork from the school in hand.. I filled out several forms and tests for the doctor.. he looked over all of it and said that he felt confident that Andrew DID in fact have Asperger's Disorder, but to be safe and thorough for the school, and because they may not accept HIS diagnosis (with him just being a general ped.) -- he would send us to a Developmental Pediatrician in Augusta, whose specialty was these types of disorders. It took about 6 months to get the appointment with her -- but that was a lot quicker than waiting a year and a half to get in at Emory.
I took the preliminary diagnosis from Andrew's ped. to the school the next day (as he instructed me to do) with a note from him that we would be seen, in 6 months, by the Developmental Ped. in Augusta. And.... Heeerrree'sssss where my troubles began! They were NOT happy that I had gone and done exactly what they had told me NOT TO DO!
Up until now... I was working.. I had a good job -- I worked in Defense Contracting with one of the many contractors for the military base here in our town. I LOVED my job... I was GOOD at my job (I had been doing this same thing for about 14 years) and I made pretty good money, too. I didn't make GREAT money.. but I made good money. Rich also worked with one of these contractors. We worked in the same building out on the base -- but with different contracting companies. Together we made a good living. We had a nice little house, in a great neighborhood, and the school that Andrew attended (and Austin would later attend) was supposed to be one of the best in the county. HA! I beg to differ!
Six months later ... Andrew was formally diagnosed with Asperger's Autism. His Dev. Ped. called it this. She said that the reason she refers to it as Autism instead of a Disorder, is because IT IS, in fact, AUTISM.. and to call it a Disorder diminishes it as such and gives school systems cause to label it something other than what it actually is. We would find this out as well. She said that there is NO WAY Andrew doesn't have Asperger's.. He fit ALL the criteria.. He had ALL the signs/symptoms.. although more than half were on the mild side.. he had them ALL.. therefore he was considered as being moderately affected... not mild, or severe.. but moderate. She explained to us that all of the signs of it had been there all along from the time he was still a baby.. (from his rigid eating habits, his lack of sleeping, his sensory issues, lack of social awareness, and trouble with social interactions)... and that she doesn't know how it didn't get noticed before now. She also congratulated us.. saying that we were doing the right things for him all along, even though we didn't know about his Autism yet. Well, with the exception of forcing him into the classroom thing.. that we could have done better.. but who knew???
Over the next few years.. he would have his +'s (pluses) added.. His formal diagnosis is Asperger's Autism with... Hyperlexia (reading and doing math at an earlier than normal age), Sensory Integration Disorder, Sleep Disorder, Hypotonia (weak muscles/muscle tone), and Tibia Torsion.
The tibia torsion, we would later find out... after seeing a pediatric orthopedic doc .. was really a problem starting at Andrew's hips. His hip bones were turning in, causing his tibia bones to also turn in, causing him to walk extremely pigeon-toed.. ALL caused by his Hypotonia, which was directly related to his Autism. So, Autism doesn't just affect the brain.. it also affects the muscles and bones, and physical well-being in some children.
OK-- so back to after the formal diagnosis.. According to his Dev. Ped., he needed services from the school that would include more than just Speech.. although this was a great start. Her initial words to us were... "Yep, He's definitely got it! Here's your formal, written diagnosis for the school.. Good Luck! Let me know if you need anything and I will see you again in 6 months."
What??????!!!!!!! What do I do now???? Where do I start??? What's next??? What do I ask for from the school??? She told us nothing more. I went into a kind of panic mode/tail-spin... I was on one-hand devastated with the diagnosis, I was also relieved that we finally knew why he was so different, I was still in a state of denial at times, but also trying to gain some kind of acceptance of it, and I was trying to figure out what I needed to do for him now and how to get the school to agree to help him. I called all the agencies I could think of ... Parent-to-Parent of Georgia, Georgia Autism Association, and a few others that I can't remember right now. I got told everything bad by these people that you can think of. I was told that we would be raising him for the rest of our lives, that Andrew would never be able to live on his own. I was told that I shouldn't expect for my marriage to work out, because 90% (or something like that) of all marriages of families that have a disabled child in the household end in divorce. I was told that I would probably lose everything I owned and life as I knew it was over. Nice, huh?!?! Needless to say, I wasn't given much hope. BUT... I am stubborn, and none of this was acceptable for me or Andrew! I made up my mind that I would do whatever it took to help him to grow and mature and to one day be able to live on his own and have his own life. This is, after all, the goal we all have for our children .. is it not?! I was also told that to get anything accomplished with the school, I needed to be the "bitch-mom"! This, I could handle! After all, they already thought of me as "the bitch-mom" because I went over their heads and got him formally diagnosed.
It was at our next visit with his Dev. Ped. that she finally told us -- (after we told her some of the problems that he was having at the school) -- that he needed OT and PT and help with his social skills. She handed us a prescription for OT and PT for the school... and tried to push medications on us for Andrew (which I refused). I felt confident that he could learn appropriate social behaviors and how to manage his meltdowns, although I knew that it would take a lot of work and patience from his family.
I took the formal diagnosis back to the school the next day, and asked for a meeting to begin this process of getting him the services he needed to help him. This began a long roller coaster ride of meeting after meeting, the school board trying to intimidate me with having 15 or more people in these meetings with just me and/or my husband there, the school board trying their best to have him labeled with EBD (Emotional Behavior Disorder) instead of Autism as his main diagnosis, them lying to me out-right about what it says/means in the law books for NCLB (No Child Left Behind) and IDEA (Individuals with Disabilities Education Act), them twisting my words or out-and-out fabricating what I actually said with what sounded better "for them" in the meeting notes, his teachers saying one thing to me in private, but something totally different in the meetings, etc.
The last 3 months I worked.. which was in his Kindergarten year... I don't think I worked a full 40 hours in a given week. I was to busy being called to the school for meetings.. or there would be one scheduled.. I would ask for the time off from work, be on my way to the meeting and get a phone call (in route) that the meeting was cancelled and would have to be rescheduled because one of the people that was scheduled to be there was having surgery. Really?? You didn't know this ahead of time, and couldn't call me .. I don't know.. like, YESTERDAY, to tell me this?!?!?! This WAS a scheduled surgery after all (yes, I found out), so they knew well in advance that this person wouldn't be there. But did they call ahead of time??? NO!!! They waited until they KNEW I had taken off of work and was on my way before they "remembered" to call me and tell me. (My boss was really GREAT! She understood and told me if I needed to go.. to go and take care of my son.. not to worry about my job. As I said before.. I was really good at my job, and even though I may not have worked a full 40 hours in a week.. I ALWAYS got my work done for a full 40 and then some.) This was the kind of crap they pulled... to try to intimidate parents to shut them up and not ask for/fight for what their kids actually need that the school didn't want to provide.
Now I know what you are thinking... "The school systems don't have the money" .. well, that is what they said to me too.. however, I would learn that when a child is formally diagnosed with a disability and is placed on and IEP (Individual Education Plan) (which Andrew had), the school gets EXTRA money for these kids depending on their disability and what they need. There is also a way that parents can find out "how much extra" the school is getting for their particular child. They were getting more than $5,000.00 EXTRA just for my Andrew.. and all he was receiving from them was Speech??? Really??? They didn't have the money to give him OT, but they had the money for a new basketball court, and they had the money to fence in the whole school yard, and they had the money for new playground equipment for the older kids... but they couldn't find the money in their budget to give my child the services he needed to continue to thrive in school. This amount was just what they were receiving for my child.. One parent I talked to found out that the school was getting over $14,000.00 EXTRA for her child.. now granted her child was in an actual Special Ed Class, and Andrew was in General Ed., but again... the only services her child received otherwise, was Speech ... WHAT????? REALLY???? There is something majorly wrong with this picture!
I ended up quitting my job towards the end of Andrew's K year, because I just couldn't do it all! Between working full time and taking care of Richard and the boys after work.. there just didn't leave much time for me to do the research I needed to do to be an effective advocate for my son. We couldn't afford to hire someone to help, even with us both working, and besides I knew that Andrew would need "other" therapies that the school wasn't providing, and I also needed to research and find out where I could take him for these. I also knew that my insurance (through my work) wouldn't cover the costs of these therapies that he needed, and I knew that with me not working .. we would qualify for the state insurance -- which would cover the costs of these therapies. I knew that whether I quit my job or decided to continue working and pay for the therapies out of pocket.. we would probably lose the house; also if I continued to work, how would I get him to the therapies? I am only one person, and Richard said that I was better with dealing with these people and these issues than he was, so it was decided that I would be the main one dealing with all of this.... school, insurance, Dr. appts., therapies... and stuff. So it was decided, by both of us, that I would quit my job and take care of our family full time. I also felt really bad, because I knew that I needed to be there working, but I also needed to be there for my son.. I didn't feel like I was giving them 100% because I couldn't be there all day everyday, and I knew that I wasn't giving my son 100% because I was just too tired at the end of the day. I was completely and utterly stressed out and felt like I was about to have a nervous breakdown if I didn't let go of something... I discussed this with my boss and turned in my resignation.. she told me that she felt like I was making the right decision. She knew that I really needed to focus more on my son and she said that when I was ready.. she would hire me back in a heartbeat. She even gave me a raise my last week of work.. It was my yearly evaluation.
So, I quit, and I kept plugging on, trying my best to fight the school to get for Andrew what he needed to thrive, and THEY kept fight me and telling me no. I was finally able to get them to put his formal diagnosis on his IEP with the help of my Dad. He was a retired Investigator for OPM, and he investigated things like worker's comp and EDUCATION, so he knew a little bit about this. AND LET ME TELL YOU.. when he walked in to that first meeting and gave his credentials... they sat up and listened.. they were scared! I was thrilled! They started treating me with a little bit more respect after this.. not a lot, but a little bit. Hey, it was a start anyway, after all they had already put me through.
Ok-- so again, this is a lot of information.. and this will have to be in parts.. so I will end here for now and continue on with the rest at a later time.
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