March 29, 2010 - SCHOOL

Good Morning Sunshines!!

Spring Break - YAY! a break from the very regimented routine of getting my daughter out the door and to school. She'll get to sleep in, which is great because sleep deprivation is an issue for her. Although she generally gets 9 or 10 hours of sleep, she wakes exhausted (getting her settled in at night is a problem as well - she rarely goes to sleep before 11 pm). This is very common in Aspies and other individuals suffering from sensory integration disorders. Their brains just don't shut off as completely as non-Aspies, even during sleep. As part of her IEP, she doesn't have first period, which allows her to get to school an hour later - this accomodation has been a Godsend for us - so keep it in mind as part of an accomodation request. My daughter will be seeing a neurologist in a couple of weeks to make sure that she doesn't have a sleep disorder, just in case.

All of that being said - I want to share our history of how I realized that my daughter has Asperger's:

First, my daughter was a preemie - sensory integration issues are not rare in preemies - though at the time, I had no idea what sensory integration was. So, her motor development was a bit delayed, but not by more than what would have been her full term gestational period. Which basically means she was a couple months behind other babies her age. Also, her speech was delayed, not radically - but by a bit. Until she was three years old, she was a perfect baby - no terrible twos! Then at three years old she started having horrible tantrums, which I thought was normal, just delayed "terrible twos". Then it got to the point where nothing made her happy -she would literally scream non-stop - all the time. Unfortunately for both of us, I thought she was just spoiled and disciplined her accordingly. Can you say GUILT!!! Kindergarten wasn't bad, teacher said she was immature, which I attributed to her being a preemie and the baby of the family, still not too worried, other than I thought she was kind of a brat. First grade - bad. So I changed her school, second grade worse and third grade - it all blew up. She's had the worst luck with teachers, which I think is a problem with the educational system's lack of quality teachers AND the lack of training that teachers receive on autism and Asperger's specifically.

In third grade she started getting bullied by other children (boys) mercilessly. I noticed that she didn't get invited to birthday parties anymore and she told me that she spent all of her time at school alone. I recognize now that she was extremely confused and anxious about social norms and isolated herself rather than try to navigate the school yard social jungle. At the same time she started having tantrums before school and her attendance suffered. She is very intelligent, so she was able to maintain grade level knowledge, but she DID NOT want to go to school. I was pissed! I thought that her behavior was based on the bullying and the schools inability to rein it in.

Fourth grade, changed schools again - at the beginning of every year and especially at new schools, my daughter is very hopeful. She thinks that things are going to be different, the kids will be nicer, she'll try harder. Everything is better for a while and then the pattern of decline begins - reluctance to go to school, exhaustion, lack of organization and non-completion of classwork and homework - God, homework was and is a nigtmare. In her way of thinking - school is school and home is home - no school at home, which means NO homework. I tried everything - taking away priviledges, making her sit at the table until it was done - she would sit there for hours and not budge! Will of steel!!

At this time, I learned about Asperger's. She was clearly showing multiple signs of having Asperger's including problems navigating social situations, extreme anxiety and frustrations, which manifested in tantrums which included self injury, subject matter fixation, extreme sensory sensitivity - her socks and underwear have to feel just right, her clothing has to be soft enough, loud or competing noise drives her crazy, extremely picky with food, bright light is a no-no and DO NOT touch her without asking her first (can I have a hug? has become my favorite question) and generally lack of maturity for her age.

On the academic side, she was having a difficult time finishing classwork, I heard from teachers regularly that "she's very bright, but lazy and/or unmotivated." What I know now is that she has an information processing delay - which basically means that when she receives information, it comes in kind of jumbled and it takes her brain a bit to organize it - this creates difficulty keeping up with say, listening to a lecture and taking notes at the same time - or for younger students, writing down problems from the blackboard and answering them in a timely manner.

Ok, so I started asking teachers whether they thought my child might have something wrong, fourth grade teacher said maybe at the tailend of the school year, so in 5th grade I brought it up again following my first parent/teacher conference. This teacher said no, she was just immature and needed more discipline. At this point I started doing my homework and learned to become my daughters personal advocate. People I can't stress this word enough - ADVOCATE - you must become your child's advocate because otherwise, they will be brushed under the rug, passed along, misdiagnosed, mistreated - I could go on and on. The scary part is that time FLIES! So, by the time you've figured out what's going on, two - maybe three years have gone by. It's exhausting, frustrating work - but ultimately so worth it.

Ok, so fifth grade I get her a formal diagnosis of Asperger's and ask for an IEP. She ended up with a 504 plan instead of an IEP, mostly because I was an uneducated fool when it came to special education. No accomodations were made for her, her anxiety escalated and then BOOM we're in the 6th grade - another year, nothing accomplished. Keep in mind that she's scoring in the advanced level in most subjects regularly, so I kept getting told that she didn't qualify for special education. This is where "high functioning" comes into play. But at this point, I'd done my homework and insisted on an IEP - which was scary as hell and intimidating because I had a group of people using accronyms and language that I didn't understand. They told me that my daughter could not receive services or accomodations as an autistic until school psychologists assessed her and gave a formal assessment of her condition, even with a formal diagnosis from a psychiatrist. Now - this is important because California's school system hasn't jumped on the Asperger's bandwagon yet - they have services for austistic children and recognize Apserger's as being on the spectrum - but they're way off on diagnosis and assessment. They use the ADOS test - which is a test based on language skills and facial/physical responses to certain questions and social situations. So basically, it's based on social pragmatics - which define Aspies in many ways due to their lack of social graces. The thing that the ADOS doesn't take into consideration, especially with girls with Asperger's is that Aspies can have conversations, they can make and at times maintain eye contact, they're verbal, and at times verbose. Girls especially, learn to mimic social reactions and behaviors - this is why their diagnosis' often come later than boys, who are generally diagnosed at around 5 years. All of that said - the school district deemed that my daughter did not have Asperger's and therefore only qualified for services in speech therapy. Ok, WTF - I had two separate private therapists who had given me diagnosis, she was in private therapy for treatment as an Aspie and the school was telling me, "nope, sorry, can't help you, your child's not autistic". The important thing to know here is that if this happens to you and you're not satisfied with the assessment of the school disctrict psychs - you have the right to request an assessment from an outside source (psychiatrist) at the districts expense.

Then BOOM - 7th grade! But a ray of hope - she got into an art and language art charter school that's known for it's great curriculm and teachers and they have the best speech therapist in the district there. This is a speech therapist who specializes in social pragmatics and is an expert in Asperger's. She met my daughter and immediately recognized her as an Aspie. All should be right in the world, right? Wrong! Another IEP, inadequate accomodations, and no implementation of the accomdations that are in place. Same pattern starts - high anxiety, bad attendance, etc. The difference is that I was no longer willing to take what the educators were telling me as fact. My daughter now had a new therapist - so we're at three diagnosis' - and I know now exactly what accomodations need to be made. I've gone over it and over it with her therapist and I know my daughter very well. The problem was getting the principal on board, I couldn't get her on the phone, I couldn't get her to speak with the therapist so that an academic plan could be charted and most importantly, I couldn't get my daughter's accomodations upgraded and implemented.

So, recently I hired a lawyer. Because I can't afford to keep the lawyer on retainer, I met with her, paid the consultation fee, plus her fee for one hour and told her about my plan - which was to give the impression that I had a a lawyer willing to sue the bejesus out of the district if things didn't start moving along. She wrote a very, very intimidating letter to the Superintendent and the pricipal - who was on the phone to the lawyer within an hour of receiving the letter (we faxed it). Within a couple of days I had a new IEP meeting scheduled, district employees all over me and I'm happy to say that most if not all accomodations have been put in place. This isn't to say that things are perfect, but they're finally moving in the right direction. I've committed to being the biggest pain in the school's behind if that's what it takes to keep things moving forward and I presented a united front, which included the lawyer, the therapist and myself, as my daughter's advocate. Remember that word - ADVOCATE! It takes time to educate yourself, I read everything I can find on Asperger's so that I'm as knowledgable as the expert so if they say something that I don't agree with, I can call them on it. Also - stay organized, keep everything ever given to you regarding your child' condition. And know your rights and the rights of your child. You have to stay one step ahead.

So - here we are - up to date.

I know I've given alot of information - whew! But I hope that some of you recognize yourselves in this story and won't hesitate to ask questions about the educational process or make suggestions on how we can avoid the setbacks that I experienced. We can all benefit from each other's successes and frustrations.

Later posts will include my experiences and our lessons learned while improving my daughter's quality of life at home, the quality of our family life and how we've succeeded in bringing a very loud, physically demonstrative Latino family on board so that my daughter can experience all the beauty that that family has to offer without stress and anxiety - most of the time.

And of course - this battle isn't over - it'll continue for a lifetime. I expect to experiene setbacks and successes on a regular basis, but they'll all add up to valuable life lessons. Remember - DIFFERENT IS BEAUTIFUL!!