Tuesday, August 31, 2010

My Hopes and Dreams for Jacob

Jacob just showed me that if he studied, he could do well. Over the summer, he attended the AAA driving school and failed both the mid-term and the final exams. Tonight, the class instructor offered retakes of each test, and he passed both. It feels good to be proud of my son for accomplishing something. He’s never been motivated to study, and this is the first time he’s applied himself and succeeded. Next is the written test at the DMV, so he'll have to study some more to pass. That test is 60 questions and he can miss no more than 8 questions. He’ll have up to 3 opportunities to retake the test if he fails.

I’m seeing other bits of emotional growth with Jacob. It’s really nice to see him show interest about what I think and how I feel. He’s had a week to study for tonight's tests, and he's not been trying very hard. I’ve been telling him if he did his best, even if he failed, I’d be proud of him. But, if he didn't study and failed, I’d be disappointed. A couple times, he's asked if I would give him credit for just for attending the class. This was pretty big for Jacob. As is common with people with ASD, his feelings have always mattered most. It's not so much that he don't care; it's more like what he doesn't understand why everyone else doesn't think the same as he does. Being a parent can be tough, but having a child that has no interest in what I thought has been exceedingly stressful, to say the least. Especially since Jacob was an only child, his behavior became the norm in our household. I got used to things being difficult. When Jacob asked me for my approval, that showed he was vested in our relationship. That was very cool. I'm seeing stuff like this happen more and more, but I’m still getting used to how nice it feels.

Jacob calls himself “the tall silent type”, and he means it. I think this is good - the alternative would be a non-stop talking Jacob, and we all know how annoying it is to listen to someone who speaks without taking into account our perspective. I know he doesn’t want to talk about school, but when I pick him up each afternoon, I can't help but about his day. His response so far is he doesn’t have an opinion. He does say it’s boring and the teachers talk a lot. He says he’s not had a conversation with any of his peers and he sits by himself when he eats lunch. But he also says doesn’t hate it, so that's a good sign. It’s only been 2 days, so I have to give it some time and stop asking him how the day went. I know it bugs him when I do, so I guess it's my turn to take into account his perspective and respond accordingly.

I'm really trying to help him widen his interests beyond the few things he currently likes. I know the school has a variety of clubs, so I’d really like him to join one of these. Since Jacob is new to the Culver City school system, the annual IEP will be scheduled in the next month. I want Jacob to attend and explain the administrators to what he wants. My goal is to transfer the advocating to Jacob so he can start doing it for himself.

Jacob is a cool kid, so it’s nice to see the cool stuff emerge. I know the journey is still ongoing, but at least it feels more like smooth sailing than rough waters. And for that I am very thankful.

Saturday, August 14, 2010

The Great Racial Divide

When Jacob was diagnosed at age 3 1/2, I was fortunate to receive a lot of services from both LAUSD and the Westside Regional Center including speech and occupational therapy, in-home behavior support, a one-on-one classroom aide for several years, many hours of respite, and summer camp placement when school was out. Everything was provided at no cost to my family, and most were freely offered without a request from me. I think my situation was somewhat unique as some families of children with special needs that attended school with Jacob had to go to court to get some of the same services. So I was extremely fortunate that I was able to get what I needed for Jacob without much of a struggle.

At that time, we lived in beautiful and affluent Pacific Palisades, a Los Angeles coastal community situated between Santa Monica and Malibu. I'm sure the income level of the area is not much different today than it was when we moved to the neighborhood in 1994, and it may even be higher. According to the Los Angeles Times, the median household income is $168,008, high for both the city and the county of Los Angeles. The percentage of white people is high for Los Angeles county and not especially diverse for the city or the county. The median age is 43, old for the city and county, and the population 50 and over is among the county's highest. So basically, it's a neighborhood of rich, old, white people.

I thought about this during a conversation I had today with a preschool teacher from Florence Avenue Elementary. She is the lead teacher in a class for students with autism. Her school is located between Inglewood and East Los Angeles in the 90001 zip code.

Just for comparision, I reseached the demographics of the school's neighborhood on city-data.com: the average adjusted gross income is $22,565; 35.6% live below the poverty level; 78% of the residents speak Spanish; 21% speak Engish; 45% are foreign born; and the median resident age is 24 years. So this Los Angeles neighborood is pretty much polar opposite of Pacific Palisades; it is populated by poor, young, Hispanic people.

The teacher was young and very enthusiastic about her job. She obviously loves her work and has been told she is the best preschool teacher at her school. I could tell that she really cares for her students. She even makes home visits on her own time to help the families, but there are many, many obstacles that she cannot address. Some of parents need behavior management classes to better cope with their child's behavior issues. Many parents do not speak English. She spoke of one family that was in crisis; the mother of her student has no family support, and the younger sibling is also showing sings of an ASD. Needless to say, this young Mom is completely overwhelmed and not coping well.

Instead of having the Westside Regional Center like I did, these parents have the East Los Angeles Regional Center and are not treated as kindly as I was by Westside. The teacher told me that the parents of her students are informed that the East LA Regional Center that no money is available and they should go to to the school district when their child turns 3. The teacher also mentioned that her school's administration was not as supportive as she'd like. So when these families try to get any services for their child from the two traditional avenues where I was able to easily get help, they find it difficult, and sometimes impossible, to access to services for thier child that they so deparately want and need. Add to this the California budget crisis which has severely cut monies to both the Regional Centers and the school district, and these poor families of color are really underserved.

Not only do these families have a more difficult time getting services, but it takes them longer and requires more doctor visits to receive an Autism diagnosis. According to the study "Ethnic Disproportionality in Students with Autism Spectrum Disorders" by Michael Morrier, Kristen Hess & L. Heflin, Hispanic and African American children were referred to special education at reduced rates, they received an ASD diagnosis at older ages than Caucasion children, and they required more vistis to health care professionals than Caucausion children in order to receive the ASD diagnosis.

What an incredibly sad situation. Being poor and having to struggle to support your family and make ends meet is stressful enough. Throw in a language barrier, a child with a developmental disability, and a lack of both access to and information about available support services, and this is a real recipe for disaster for this community in particular and our society as a whole.

I worry about these families because I know the difficulties they face. But they will have a much more difficult time finding ASD support services for their child than I did, just because of how much money they don't make and becuase they aren't white. I've been both wealthy and I've been low income. Needless to say, it's much tougher to care for your child with special needs when you don't have money. So if a family is poor, Hispanic, or African American, as if having a child with ASD was not difficult enough, these parents will have to work harder in order to get the same support for their child than it was for me.

I wish I had the answer or could solve the problem. But I'm in the middle of raising my own child with ASD, so I just try to keep focused on Jacob and hope everything I've implemented for him works. I only wish every family could be as fortunate as was in the journey to help their child. Empowering these families is the key, and the Autism Society Los Angeles is planning on addressing this issue with this school. More about this in a future blog.

Thursday, August 12, 2010

Public High School is soon to be Jacob's Reality

Jacob will soon be starting 10th grade at Culver High School, and he's not really concerned or excited about it. In fact, he doesn't seem to act like he cares much at all. He's typically pretty low in regards to his own internal motivation or enjoyment levels and anything outside of U Tube, the internet, movies, South Park, Family Guy, Steven Colbert and hanging out with his pets is something he considers to be a chore and not something that could be a potential source of fun. He's already made up his mind that High School is going to be boring. He's not happy about the 8AM start time and the homework that he'll have to complete each night. He has two buddies from his previous school that he regularly telephones and has over for sleepovers at our house, so new friends don't interest him. He thinks girls are ok, but he doesn't care about a girlfriend. So Jacob is totally at ease with the prospect of starting a new school.

Me, on the otherhand, not so much. Jacob's last couple of schools have been small. There were about 300 students at the non-public school that he attended for 6 years and only 10 (yes, that's right, I said ten!) at the private school that he attended last year and where I'm employed. All the kids at my school were younger and/or more impacted than Jacob, so he never developed any friendships. On the good side, I was actually able to see him the entire day, and it really helped strenghten our our relationship. I don't know how we could have done this without me being the school Principal and him being a student.

Over the summer, Jacob attended the Culver High special ed summer school, a modified version of the regular year: there were only 400 students on the entire campus, he was with only 10 other special-ed students, and they stayed in the same room for the entire day which ran 5 hours long. This went fine with no problems, but Jacob made no attempt to interact with any of his classmates. He told me he found the entire experience "a waste of time" as he likes to label anything that falls outside the scope of his limited range of interests.

So this, by stark constrast, is going to be a whole other world. Culver High's student body numbers over 2,100, and when I think about Jacob entering a campus so large, my head begins to spin. As we know, teenagers can have moments where they are wonderful and interesting creatures, however rare those moments may be. But many times, high school social environments are confusing and complex scenes in which to navigate even for the most typical of teens. These issues can be magnified tenfold for a child with any type of disability. If he doesn't fit in, Jacob might be ostrisized, bullied, victimized, or worse. We've all heard stories of teens who've kill themselves due to unbearable mistreatment by their peers. Will Jacob avoid punishment for being different? I have no idea, but what I do know is he'll either succeed or he won't. If he fails, we'll go back to the school district to ask for alternative enrollment options. I only hope that if we have to make this decision, it will be due to nothing severe having taken place.

So, I drop him off at 8:00am in just two weeks from this Monday. Half of me is terrified, while the other half is curious and optimistic. Let's hope that one day very soon the last two emotions miraculously morph into a relaxed state of being.