Thursday, April 30, 2015

The Transition to Public Special Education

Tate is having wonderful experiences at school. He likes school and that is so important. But that has not always been the case. Once upon a time, he cried almost every morning before school. School was very stressful for him. He had a lot of needs that were not being met. He could not communicate his needs. Anxiety ruled him. It was hard on him and it was hard on our whole family. Because when Tate is unhappy, we are all unhappy.

When Tate began kindergarten he had come straight out of early intervention. He began Applied Behavior Analysis (ABA therapy) before his third birthday and we aimed for forty hours a week of discrete trial. Incidental teaching was used throughout every waking minute, trying to turn his whole day into one learning experience after another. We were trying to “catch him up” to his peers and get him kindergarten ready. We did the ABA with experts in the field of autism and the price tag was huge.

I knew there might be some issues with the public school immediately. One reason being-- I had called the public school and inquired about their preschool program. I also asked about the district’s ability to provide Tate with some services for our in-home ABA therapy program. The voice on the other end of the phone told me if I had determined ABA therapy was best, I had been reading all the wrong books. I knew ABA therapy was the ONLY research-based therapy at the time. So my first impression of the special education director and the program was not good. I did not contact the school district again regarding Tate’s education until he was ready to start kindergarten. We had an IEP meeting so Tate would begin school with paraprofessional support. It was evident from our first meetings the special education providers and I were not going to agree on what an appropriate education for Tate would look like. It did not get better for a long time. I had set my expectations high and I was sorely disappointed. I was also shocked. Tate has five older siblings and I had NEVER had any complaints in the past about our children’s education. I had a lot to learn about the difference between general education and special education.

Tate at his early intervention program
I had a lot to learn about the difference between private early intervention and the public school’s special education program too. There were few similarities. When I had questions about autism or challenging behaviors while Tate was in early intervention the staff had answers. Those first few years of public education I saw little evidence the ones providing Tate’s services understood autism.

We had some unforgettable experiences those first few years of public education. When Tate was six, one day he used his pencil to pretend. He pointed it at his paraprofessional and said “pow pow.” The para mentioned this to her supervisor. That teacher took Tate to the principal’s office. She asked if the incident should be reported to the police as the school had a zero tolerance for threats. Tate was six. He has autism. He was holding a pencil. And he was made to feel like he had done something bad. In his early intervention program it would have been celebrated. Pretending! Object Substitution while pretending! This was huge! The autism expert from Tate’s early intervention program would have written me a note or called me to tell me the great news. In the public school setting he was taken to the principal. Luckily the principal was a very reasonable man. When he told me about the incident he was smiling and assured me he never even considered making that call to the police.

Tate at Kindergarten
One phrase I heard often when I made a request for a service was, “We’ve never done that before.” Social skills coaching on the playground was one of those things they’d never done before. The argument against it was that Tate needed free time on the playground to do whatever he wanted. He would have paced and stimmed. I did not want those precious teaching opportunities wasted. The consultant / advocate I brought with me to our meetings argued for the coaching. In an effort to convince me Tate did not need coaching on the playground, the school district brought in their own autism consultant. The plan was for her to observe Tate for a few hours and then give some recommendations. (My own consultant had worked with Tate for years and knew him well but they wanted someone to observe him for a few hours and make recommendations.) I asked if I could be present to hear the consultant give her recommendations when she was through with her observations. Even that was a point of contention, as some did not seem to want me present. Thankfully, the principal called me and told me when the meeting was about to convene and I lived one mile from the school so I was able to get there and hear firsthand what was said. I will never forget what I heard or the looks on faces that day. That consultant agreed Tate needed playground coaching. AND she recommended even MORE social skills coaching than I had asked for be incorporated into his school day. I smiled all the way home that day. The suggestions made by the district’s consultant were not implemented in full but I am quite certain they would have gone with her advice had she said Tate needed LESS services. No one argued with me about the playground coaching much after that. For every battle I won though, I lost two.

We fought many other battles as well. I asked for Tate to receive a warning before he was to have a substitute teacher. I understood it would not always be possible and I know sometimes people become ill right before school begins. However, if a teacher had scheduled an absence and I could give Tate a warning before he walked into a room with a stranger in charge, it made a world of difference to us at home. Tate’s anxiety level after having a substitute was often high. I asked. I begged. I demanded. This became a real problem and no matter how many times I explained the need it did not seem to matter. General education teachers would willingly tell me when they were going to be absent. But the special education staff rarely seemed to be able to get me that information. The time that mattered the most was once when Tate had a gift to give a special education teacher before the holiday break. He took it to school two days before the break only to find a substitute. The secretary told me the teacher had scheduled time to be off long before that date. He was so hurt. If the goal was to show me who was “in control” then I was shown. Often. There was nothing I could do. I saw over and over that one person could ruin Tate’s day and ruin our evening. One person.

Para professionals and I often had to communicate in secret if we had information we wanted to exchange because I was not allowed to talk to my child’s paraprofessional without their supervisor present. I know what you are thinking. It was a ridiculous rule. It was a hindrance to everyone involved, especially my kids. I was told I could not even say, “There is a Chapstick in Tate’s pocket” to the paraprofessional. The special education director could not be moved no matter how many times I appealed to her. Despite the rule, the paras and I found ways to communicate when it was in Tate’s best interest. On two separate occasions I received phone calls at home in the evening from two different substitute teachers I’d never met. Both had been subs for Tate’s para. Both wanted to tell me something that had gone on at school they felt I should know about. Both had been told they were not to talk to me. They did anyway. Not that I was able to do anything about the problems they discussed with me though.

I came away from that first experience with my district’s special education department disheartened. It has taken me years to recover and be able to fully trust my children’s IEP teams. We have wonderful teams now and are very satisfied. The differences are amazing. My faith has truly been restored.

I learned some really valuable lessons and made some valuable observations those first years.

1.     One person can make or break a child’s education. One person.
2.   When your special needs child is miserable at school, the whole family is affected.
3.   The words “Promote independence” are spoken with a smile by educators, but those words are code for “reduce services” and a parent should not be fooled. Of course everyone’s goal is for a student to become independent, parents included. But not prematurely and not to save the district money.
4.   If the school wants to amend the IEP to “promote independence” and promises the services being reduced “can always be added back in later,” it will take an act of Congress to get those services back. Parents should not allow themselves to be coerced or pressured into signing anything amending their child’s IEP to reduce services.
5.   The law says a child’s needs must be met. So, in theory if there are ten children who need XX for one hour a day and only one person who can deliver XX, working eight hours each day, the district is obligated by law to hire another XX provider. In reality what I believe happens is the children who needs the XX the most get the XX and the children who need XX the least do not get it, OR the eight hours is split between the ten children. But an additional provider of XX is probably not going to be hired. The law is often ignored but dollars carry a lot of weight.
6.   Privacy policies can be a real detriment to a child’s education and safety. Privacy policies keep substitute teachers and many others from knowing about a child’s disability, needs, behaviors, treatments…
7.   Not every educator is good at his / her job.

8.   Tenure protects bad teachers.

Wednesday, April 22, 2015

There is no one to blame, myself included.

In my blog post “15 Truths of Parenting a Special Needs Child” I touched on a topic I have been meaning to expand on for a while. It was Truth number twelve: “Sometimes, once in a while, there are a few of us, not many mind you, but a few of us parents, who feel guilty. What if I had not taken that cough syrup while I was pregnant? What if I had not used all those cleaning products while I was pregnant? What if we had started the early intervention sooner? What if we had tried harder and done more therapies? Sometimes we think about these kinds of things…. but mostly we don’t.” Mostly we don’t because we are too busy!

Tate and Sydney, Dec. 2014
My daughter’s disability was a direct result of her birth mother’s poor choices. Fetal Alcohol Syndrome is a disability a child is born with that is completely avoidable and caused by a pregnant mother’s alcohol consumption. There is a direct cause and we know what it is! Parents of children with autism do not have that. We do not KNOW and it is maddening sometimes. We have these little nagging doubts once in a while. Like: What if, someday it is discovered, taking ibuprofen while you are pregnant causes autism? I did that. I took ibuprofen sometimes. What if, research in the future tells us living near high voltage lines is the cause of autism? We built our home very near power lines. What if eating fish while you are pregnant is what causes babies to be born with autism? I ate an occasional tuna sandwich during those nine months. What if I did this to him? Most of the time those little nagging doubts are silent but once in a while they whisper to me.

I have read the newer research suggesting autism is genetic and begins in the womb and I believe it is an accurate premise. However, I live with one foot in the autism community where somewhere between 25% and 50% of parents believe immunizations are to blame. So, I hear it. A lot. And, although I know there is really no research to back it up and I do not believe immunizations are to blame…. What if? I know Tate was “quirky” from infancy, but he did regress at age two and sometimes, once in a while, this little tiny droplet of dissonance creeps in and whispers to me, “Maybe they are right. Maybe YOU did this terrible thing to your child. You may have saved him from polio, measles, mumps, rubella, and many other diseases but you caused him brain damage.” And then, the voice of reason drowns out the whisper and I know that there is no one to blame, myself included. 

We’ve come a long way since “the refrigerator mom” theory. Some of you might be young enough that you have never heard of this theory. A man named Leo Kanner wrote a paper in 1943 that blamed a child’s autism on their parents. He believed that a parent’s lack of love and attention (warmth) for their children caused autism in their children. Bruno Bettleheim jumped on board with Kanner and wrote articles in the fifties and sixties echoing the same theory. Bettleheim compared the parents of children with autism to guards in a prison camp and their homes to concentration camps. I have never for a minute believed poor parenting caused my child to have autism. Never for a minute. But, I am just the tiniest bit defensive about this because I am not sure everyone else in society understands that. You cannot love the autism out of someone! And by the way, you cannot spank it out of someone either.

Back when I first learned what autism is and before I had done much reading or research, I did worry and wonder a lot more often if I had contributed to Tate’s developmental delays. Had I given him enough attention? Maybe if I’d read to him a little more or taken his bottle away a little earlier. Maybe if we’d watched a little less television. Tate’s favorite show at age two was The Teletubbies. At one point I actually worried that too much Tinky-Winky, Po, Laa-Laa, and Dipsy had caused Tate’s autism. 

The tiny dropper full of occasional doubts and guilt I have over the cause of autism is usually silenced by reason fairly quickly. But there are others that badger me sometimes-- Things that are directly related to Tate’s autism. I think about the things autism stole from the other kids. Those three years of early intervention we did with Tate made me absent in my other kids’ lives for much of that time. I was here but I was not focused on much of anything besides helping Tate. They all understand how important the early intervention was. They all understand I would have done the same for any one of them. They never complained. They never rebelled. They were all helpful and supportive. I gave seventy or eighty percent of myself to Tate during that time and the other six kids shared what was left. This voice does not whisper as quietly as the other and does not listen to reason as well. Sometimes it talks in an outdoor voice and I have to get very stern with it. I reason, “What else could I have done? I am only one person. My baby needed me to help him. The kids understand. They are all turning out fine!” Then the nagging doubts and the guilt are quiet. For a while.

Sunday, April 19, 2015

When Grief Takes Hold Of Me

Once in a while, usually without any warning, and almost always when I am alone and it is quiet, I remember what is missing—No. Not what, but WHO is missing—and I am overcome with sadness. But sadness is not even an accurate description of the overwhelming feeling of grief that envelopes me when I remember. The word “sadness” does not do this feeling justice.

Sadness is what I feel when a friend moves away. Sadness is what I feel when someone says something mean and hurts my feelings. Sadness is what I feel when I think about pets we have had in the past who have died. Sadness is what I feel when I think of a special material possession I have lost. Sadness is what I feel when someone else loses a child.

The feeling I have when I think of my sweet baby girl who never took a breath is beyond sadness. The feeling that I feel when I think of my Chaney is a heart wrenching pain. It is a physical ache in the middle of my chest that leaves me feeling sick to my stomach and unable to breathe well. My eyes fill with tears and my vision blurs. I can get lost in this world of overwhelming grief if I am not careful.

And so when I begin to remember, and the grief takes hold of me, I get up and move. I clean a closet. I cook a meal. I play a game or read a book. I take a walk or turn on some music. I write about my feelings in a blog post. Because if I sit and think about what could have been, and dwell on the things that cannot be, I will only miss out on the things that are. And that would rob my husband of his wife. and my children of their mother, and benefit no one.

I will see her again someday. She’s waiting in a better place. And that makes my grief so much easier to bear.

To read more about my experience with miscarriage, see Loving Chaney.

Saturday, April 18, 2015

Stumbling Through Life, Face Blind

I am waiting outside my daughter’s school when another mom greets me. I smile and say, “hello,” unsure if we have met before. Does she have a child in my daughter’s class? Is she just being friendly or should I know her? I wait to see if she wants to converse and try to gauge how I should act based on her next move. Can I “fake it” and identify her after an exchange or two? Or am I going to be forced to justify my ignorance with my standard line, “I am terrible with faces. I’m so sorry. Can you remind me who you are?” And then there is always the fear that I’ve been through this same scenario before with this same person. How many times can I do this with one person before they give up trying? And how many of the other moms around me consider me a snob because they have been through this with me a few times before, yet I still do not behave appropriately when they encounter me? This is my life. I am face blind. When I meet people, unless I am going to see them again immediately and then repeatedly, I will not be able to recognize them. Frankly, I’m baffled at the superpowers the rest of you seem to have. How do you do it? People basically all look very similar to me: two eyes, two ears, a nose and a mouth. Thank goodness for hair, or the lack thereof, and its differing colors and styles.

I cannot differentiate between faces, but I can often identify people by their voices, the way they walk, and body shape or size. If I can find a distinguishing characteristic then I am thankful. Things like a pair of glasses, painted fingernails, a tattoo, or facial hair often give me the clue I need to place someone. I can frequently identify people by their clothing or shoes, by the car they drive, or the place they live or work. Those things change though. Meeting someone out of context can thwart all my best cheats.

I volunteer one morning a week in a first grade class with a teacher friend of mine. I love it but I usually do not have the children’s names matched to their faces until the end of the year. Last year there were three boys with the same shade of blonde hair and the same type of cut. I tried every cheat I knew to figure out which boy was which and I never succeeded. Today I took my two youngest to McDonalds for lunch. A little girl ran across the restaurant and hugged me around the middle. I did recognize her as one of my little first grade friends but had no idea which one. That just exasperates me. Of course I smiled and visited with my little friend but I could not call her by name. This is a regular occurrence for me. It is bothersome. I want to be like everyone else who has the superpower of recognition!

My inability to discriminate between faces is very frustrating in other ways too. Without my husband to help me sort out the characters in a movie I am often lost. An evening in front of the television goes something like this: I ask, “Who just got shot? Was it the detective or the lawyer?” My husband patiently says, “It’s the detective.” I ask, “Who shot her?” He pauses the movie to explain, “Remember the guy we saw at the beginning of the movie? He was sitting in the car outside the bank.” Now I’ve got it straight and we can resume watching, until the next time I get confused about who is who. A few evenings ago we were watching a news show. I commented about the lady news anchor being on since the morning show. My husband explained that three of the lady anchors look similar. They all have shoulder-length blonde hair. I’ve watched this channel for years. I always wondered how the same lady managed to be in every newscast. I am stumbling through life, face blind. 

If I am in a public place I probably walk past many people who I should be greeting as acquaintances but I am oblivious. If my husband is along, he will sometimes stop to speak with someone as I walk on. Later I ask, “Was that someone I should have known?” My husband says, “Yes” and then goes on to explain how I should have known them. Usually this ends with me embarrassed and apologetic, and him reminding me that it is not in my control. Regardless, it is humiliating and frustrating.

Upon meeting people for the first time I usually let them know I have trouble recognizing faces and probably will not acknowledge them the next time we meet. I ask them to be sure and speak to me and remind me who they are. So many times people will insist, “I understand. I am bad with names and faces too.” I’m sure this is to minimize the awkwardness of my disclosure and to help me feel better. What is really does is tell me they do not really understand that my face blindness is more than just an occasional memory glitch. Until very recently I did not know there was a population of people “like me” but an internet search tells me two percent of the population is face blind, and it has a name: prosopagnosia. I also found there are differing degrees of face blindness. Some people with prosopagnosia do not even recognize their own family members or close circle of friends. I can only imagine giving my, “I’m bad with faces so can you give me a reminder?” speech to my family members. My “handicap” does not seem like such a burden to me some days when I consider how much worse it could be. When my kids climb in my car after school I know they are mine. I do have that.  I've blogged about this and more in a post about thinking with a black and white mind. Read that here: A Look Inside a Black and White Mind