As I continue to introduce our journey into ASD, I have to think about what happened next or what was the next biggest event to shape us. I would have to say our schools and IEPs or Individualized Education Plans.
My first IEP meeting came when Garrett was in headstart. It was me and 8 school staff: the 2 teachers, the principal, the SLP, the OT, the school psychologist, the school counselor, the Family Outreach coordinator. While people may say that I was defensive, I don't believe I was. During this meeting, which felt more like an inquisition, I was asked why he was the way he was. I still remember the questions like a nightmare. If I answered wrong, would they send CPS to my doorstep? Was he abused? Did I have prenatal care? Did I feed him healthy foods? Did I play with him? Did I use drugs? No he was not abused. Yes, I have frequent prenatal care as it was a difficult pregnancy. He ate yogurt, grits, and other soft foods. Played with him every waking minute to keep him out of trouble. No drugs, no alcohol, no smoking. No he was not abused. He was loved and cherished for the little miracle he was. I felt attacked. I felt accused. Heckuva introduction to IEPs.
Since then, it has been one fight after another after another with various schools or with the same school and change of staff. Schools seem to find reasons why his IEP cannot be implemented. No money. No resources. Not our problem. He's lazy and unmotivated. He won't do the work.
We have had to bring in advocacy organizations. Parent's Let's Unite for Kids or PLUK, Colorado Peak Parent, lawyers, physicians, private psychologists. I have had dozens of meetings and arguments with school staff. I have made phone calls and I have made threats. I have followed through on more than one of those threats.
The most defining moment was this school year. I knew it was going to be a challenge going from elementary school to middle school. I contacted the school special education staff and principal early to start on an integration plan such as introducing my son to the teachers early, finding his locker and practicing the combination, going through the schedule repeatedly so he would know where to go and the layout of the school. I heard NOTHING. Finally, 3 days before school started, I got a call. Maybe Garrett would come in and see his locker and find his classes. I was irate but stayed calm and helped Garrett go through everything he would need for the first day of class.
His locker was on the other side of the school and in the opposite side of the school from his classes. He was not near any friends that could help. He was not near any known teachers that could help. He was nowhere near his sister. There was something wrong with this picture. We changed lockers to be near his special education teacher. He couldn't manipulate the combination so he was given a key. We spend 4 hours practicing his schedule. This was just the beginning.
He was in regular math, regular social studies, regular science. No accommodations, no homework modifications, no grading modifications had been included. He was failing. He received an "F" because he was "too lazy to do the work" and "unmotivated." "He just sits there." We had meeting after meeting where I tried to emphasize his issues of ASD, hypoxic brain injury, short term memory impairment, and Apraxia of speech/gross-fine motor skills impairment, OCD, anxiety. In the meantime, my little guy was acting out at home becoming increasingly defiant, depressed, and anxious. I was told to "trust me" by the social studies teacher afterall, he was a "special education expert" because he gave seminars on special needs and his daughter was head of special education in Wyoming.
Ohhhh...really?
I quizzed him on what he knew about the specific diagnoses and what his test results implied. I demanded he tell me how this might play out in behavior, motivation, ability to function in the classroom. I demanded to that he list modifications might be needed to accommodate those specific issues. He was speechless. He was not able to tell me what the impact of the diagnoses were and how they played out in my child's life.
Finally, I demanded he listen to me...as Garrett's parent, I knew him best. As a clinical professional, I knew his issues the best and how they would impact his ability to work, live and play. As both, I knew what would probably work the best but willing to be open to suggestions if anyone had a better idea. Failure to do so, would result in a hearing for cause and lawsuit.
Since this last meeting, Garrett has been happier, more relaxed, less anxious. He is getting better grades, more motivated to work and has experienced so much growth.
The parent of a special needs child is the best and most fearsome advocate for their child. It is important that they be informed of their rights, their responsibilities and their resources. Never allow a teacher tell you that you don't know, they are the expert and know more than you. While there are many good teachers out there, there are also those that work only to collect a paycheck and do not have a special needs child's interest at heart and can actually resent special needs because it means more work for them.
It is your child's future. The ability to have a successful, happy life depends on intervention, advocacy and no one can do that better than an involved parent.
Sunday, April 15, 2012
Thursday, April 12, 2012
An Introduction: It's Complicated
Remember high school graduation? At the dance, there was a book of where each student thought they would be 10 and 20 years from now. What career would they be doing? Would they be married? Would they have kids? Yeah...you remember the book.
Well my little blurb read something like this: I would be an environmental attorney, probably married, no kids, driving a Porsche. I look back on that and laugh or cry depending on the day. Reality, 22 years later, does not even come close. I work as an emergency response therapist responding to suicide/homicide calls for evaluation. I've been divorced since 2001 and I have 2 kids--a brilliant 14-yr old daughter and an equally special, ASD/DD 13-yr old son with many other issues. I drive a 2002 Dodge 1500 pickup that has seen better days.
I work 15 days on 24/7, I get 15 days off. Sometimes I get a call, sometimes I don't. Sometimes I am out all night, sometimes I am home for days much to my children's distress. They can't get away with nearly as much. I live paycheck to paycheck, struggle day to day to pay bills even with a bunch of college degrees...deliberate career choices so that I could be there when my kids need me. Yes, we could use the money. No, I won't have someone else raising my kids or having them be a latch-key kid like myself. Is this the life I signed up for at 18? No. Am I disappointed? No. It's just been different than what I would have imagined for myself.
When my baby boy was 9-months old, he battled one illness after another, after another. At first it was an ear infection. Next was bronchitis. Another ear infection. Strep throat. Another ear infection and the cycle repeated. At 11-months, he started feeling better; his bronchitis was clearing up enough so we could go visit his father 160 miles away. When we got there, he got sick...again. By the next morning, he looked, in the only way I could describe...droopy. The nearby clinic got us in that morning and by the time we sat in the physician's office, my son's lips and fingertips were blue and he was barely conscious. His oxygen saturation levels had plummeted, nebulizer treatments were not working and we were rushed to the emergency room. I had never been so scared in my life. Then the hospital staff tried to start an IV. In one arm...he pulled it out. In another arm...he pulled it out. Finally, they wrapped his arms in boards and stuck the IV in his head. It was the closest I had ever come to passing out, peeing my pants and going hysterical in my life. We stayed in PICU for a week with the intubation bucket close by. Suddenly, we were discharged. The joy of having him home for Christmas, even after that brief stay, was euphoric. I still remember his picture from his homecoming. Half his head was shaved of his white-blonde hair. He was smiling, laughing that deep-in-your-toes laugh. It was infectious. His bright blue eyes were glowing. I still look at that picture and cry--not for what had happened but for what had been gained: health and strength.
Fast forward a few months, when my son was 16-months old, he said the word, "apple." Never heard it again. A month later, he said, "Purple." Never heard it again. Everyone said he was just a slow talker. I didn't buy it one minute and spoke with our wonderful pediatrician. I figured it had something to do with all his illnesses and low oxygen saturation levels. He didn't buy it either and referred us to Family Outreach where he was assessed at being significantly below developmental age levels.
So begins our story of health issues, autism spectrum, IEPs, and strangely enough, unsurpassed joy and good times and miracles.
Well my little blurb read something like this: I would be an environmental attorney, probably married, no kids, driving a Porsche. I look back on that and laugh or cry depending on the day. Reality, 22 years later, does not even come close. I work as an emergency response therapist responding to suicide/homicide calls for evaluation. I've been divorced since 2001 and I have 2 kids--a brilliant 14-yr old daughter and an equally special, ASD/DD 13-yr old son with many other issues. I drive a 2002 Dodge 1500 pickup that has seen better days.
I work 15 days on 24/7, I get 15 days off. Sometimes I get a call, sometimes I don't. Sometimes I am out all night, sometimes I am home for days much to my children's distress. They can't get away with nearly as much. I live paycheck to paycheck, struggle day to day to pay bills even with a bunch of college degrees...deliberate career choices so that I could be there when my kids need me. Yes, we could use the money. No, I won't have someone else raising my kids or having them be a latch-key kid like myself. Is this the life I signed up for at 18? No. Am I disappointed? No. It's just been different than what I would have imagined for myself.
When my baby boy was 9-months old, he battled one illness after another, after another. At first it was an ear infection. Next was bronchitis. Another ear infection. Strep throat. Another ear infection and the cycle repeated. At 11-months, he started feeling better; his bronchitis was clearing up enough so we could go visit his father 160 miles away. When we got there, he got sick...again. By the next morning, he looked, in the only way I could describe...droopy. The nearby clinic got us in that morning and by the time we sat in the physician's office, my son's lips and fingertips were blue and he was barely conscious. His oxygen saturation levels had plummeted, nebulizer treatments were not working and we were rushed to the emergency room. I had never been so scared in my life. Then the hospital staff tried to start an IV. In one arm...he pulled it out. In another arm...he pulled it out. Finally, they wrapped his arms in boards and stuck the IV in his head. It was the closest I had ever come to passing out, peeing my pants and going hysterical in my life. We stayed in PICU for a week with the intubation bucket close by. Suddenly, we were discharged. The joy of having him home for Christmas, even after that brief stay, was euphoric. I still remember his picture from his homecoming. Half his head was shaved of his white-blonde hair. He was smiling, laughing that deep-in-your-toes laugh. It was infectious. His bright blue eyes were glowing. I still look at that picture and cry--not for what had happened but for what had been gained: health and strength.
Fast forward a few months, when my son was 16-months old, he said the word, "apple." Never heard it again. A month later, he said, "Purple." Never heard it again. Everyone said he was just a slow talker. I didn't buy it one minute and spoke with our wonderful pediatrician. I figured it had something to do with all his illnesses and low oxygen saturation levels. He didn't buy it either and referred us to Family Outreach where he was assessed at being significantly below developmental age levels.
So begins our story of health issues, autism spectrum, IEPs, and strangely enough, unsurpassed joy and good times and miracles.
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