Wednesday, May 28, 2008

Juvenile Justice??? The system and our kids

Today when talking to friends about our kids and the legal system I was reminded of an editorial I wrote with my Special Needs Network co-founder (it's below). It was disheartening when Nicky was 8, but now that he is ten and inching closer to being a teenager it's getting scarier. A friend of mine said that she was afraid her son would get shot by the police one day. She envisioned someone - who just committed a crime - would stumble into her unaware child, ask him to hold a gun, he would say "yes", and then the police would come running in and yell "Stop", her son wouldn't understand and he would be shot. Only when it was too late would they know, he had no idea what was happening.

For all that we have on our plates, and I know it's a lot. The truth is we have much to do and much needs to be done. Our kids are positioned to be victims of the justice system, this is not a fearful projection, but a documented reality. It scares me just to think about it. Because I am so afraid of this I have taken some little action. I have introduced all of my neighbors to Nicky so they can be on the look out for him, should something ever happen on our street. I've attended police training programs where the officers on the street get information on how to recognize our kids. And now that I'm thinking about it I think I will take Nicky to our local police station and introduce him around. Who knows maybe one day it will save his life.

Here's the editorial that got me all wound up again!!!

(Los Angeles, CA – April 2, 2007) – What happens to children who have been diagnosed with autism or some other developmental disorder? They grow up. And, more often than not, somewhere along the way they get into trouble with the law.

An excellent case in point is the controversial July 2002 beating of 16 year-old Inglewood, CA resident, Donovan Jackson. When his father was admonished by local police for driving with expired license plates on his automobile, young Donovan was severely beaten and slammed head first onto the trunk of the police officer’s vehicle for supposedly not adhering to their commands. The incident was videotaped and it was later learned that the visibly confused and scared young man was developmentally disabled.

On any given day, approximately 130,000 youth reside in juvenile detention and correctional facilities nationwide. Studies have consistently shown that anywhere from 65 percent to 70 percent of these youth have a diagnosable mental health or developmental disorder. Approximately 25 percent are experiencing disorders so severe that their ability to function is severely impaired, according to data released by the National Center for Mental Health and Juvenile Justice.

This situation is further exacerbated by the fact that the U.S. Department of Justice reports many of its juvenile justice facilities are inadequate in their response to the needs of developmentally disabled youth in their care. These and other reports have shed light on an issue that virtually went unnoticed for decades.

Even worse, as in most other areas of the justice system, African Americans are disproportionately represented. Comprising approximately 15 percent of the total national youth population, African American youth represent 40 percent of all juveniles in detention and 60 percent of young offenders serving time in adult state prisons.

In addition, according to the U.S. House of Representatives, many of these youth are detained or placed in the juvenile justice system for relatively minor offenses and end up in the system simply because of a lack of community-based service options. And, that’s where the problem starts.

Two years ago, we formed the Special Needs Network, Inc. (SNN) to bring attention to the epidemic of autism and other developmental disorders. Working on a grass roots level to create immediate- and long-term change for families, SNN continues to seek to raise awareness about developmental disabilities, especially in the African American community, and to offer resources and other ways to navigate through the bureaucratic red tape to obtain services.

Defined as a neurological condition that occurs in children 15 to 19 months of age, autism is a developmental disability that affects a person’s ability to communicate and socially interact with others. Four times more prevalent in males, autism is now considered a public health crisis that has reached epidemic proportions, along with other mental, physical, or learning disabilities.

Statistics released earlier this year by the U.S. Centers for Disease Control and Prevention indicate that autism is more common than previously believed with one in 150 children being diagnosed on the autism spectrum versus one in 166 two years ago.

Mothers of autistic children ourselves, we were astounded at the difficulty in finding services for our children. We were equally astounded at the numbers of children of color being diagnosed, or misdiagnosed with autism and the fact that most of these children were being diagnosed two years later than the general populous.

We now know that the only scientifically proven way to guarantee positive outcomes for children with autism and other developmental disorders is early diagnosis and intensive early intervention. Called applied behavior analysis, this early intervention is a very systematic way to teach our children about how to cope with our environment and must begin at a very early stage when the brain is still developing. We have to teach them how to function our world.

Unfortunately, most children of color are not generally diagnosed until age five years, while others are diagnosed and begin treatment by age three years. Later diagnosis equals later treatment, coupled with the fact that people of color generally have fewer resources from the start.

Wednesday, May 21, 2008

Oh no, this tantrum is all mine!

I had a tantrum! An all out hands down 3 year old type tantrum. I had the tantrum that has been inside me all of my life waiting to get out. This tantrum was totally unacceptable from the "got it together mama", but I had it anyway. It began when Nicky started having a tantrum and throwing things. There I was - the good mom- on the floor with hundreds of puzzle pieces - from Nicky's puzzles - attempting to sort them and see what puzzles could be salvaged. It was probably a stupid thing to do, it was frustrating and I was getting a headache and I was angry with myself for letting them get so out of control. As I sat there trying to sort the mess, Nicky came up to me and told me his plan for the day "Library, Wendy, Clinic, Zoo". I replied (as I often do) "Yes Wendy, Yes Clinic, No Zoo, No Library" and he fell out! A full blown tantrum with screaming, throwing, kicking, hitting and even tears. At that moment I decided tantrums are not just for kids. I wanted to have one all my own, so I did.

He screamed, I screamed. He began repeating himself over and over and so did I. He said "Yes Zoo, Yes Library", I said "NO ZOO, NO LIBRARY - BECAUSE MOMMY HAS TO CLEAN UP. That's what mommy has to do all the time. Nobody else cleans up. Nobody else is trying to fix all these puzzles, nobody else is going to cook breakfast". Nicky stared at me and kept screaming. I stared at Nicky and I kept whining. He picked up puzzle pieces and threw them, I picked up puzzle pieces and threw them. A little voice in my head said "this is ridiculous are you done yet? A little voice responded back NO". I sat on the floor like a three year old, I complained, I felt sorry for myself, I yelled, I cried, I threw things, I pouted, I had a massive pity party. Nicky had bored of me after about 15 minutes and left the room. My daughter heard me from another room and I could hear her go upstairs into her room and close the door. After about 30 minutes I stopped and looked around - as if to check and see if I was in trouble - and I noticed I felt GREAT! I stood up and I began to laugh. I laughed a genuine belly laugh. I laughed at myself and I thought, thank god no one recorded that.

Next I went looking for my daughter with the knowledge that she was listening and had absolutely no idea what to do. I simply shared that Mommy had just had a major 3 year old tantrum and it felt great. I told her best of all, now that I had gotten it out of me, I felt fantastic! She replied with a small smile on her face "I heard you. At first I thought I would come and see if I could help, but I decided it was not a good idea you would probably yell at me." I laughed and said "good thinking". We both giggled and she said "I'm glad you're better now". I think she really appreciated my confession and getting to see that even Mommy breaks down sometime, and things are still okay.

I just loved the fact that I have reached a point in my life, where if I want to do something I can do it. I can acknowledge that it's hard and not feel like a failure. I can acknowledge that I don't like things and it's okay not to like them, it doesn't mean I'm not good enough. I can have feelings and it doesn't mean I'm a bad mom. I'm learning being a good mom does not mean I don't make mistakes and it sure as heck doesn't mean I have to be perfect. I'm not perfect and I want my daughter to know that being "perfect" is impossible, because we are human and being human is okay.

Tuesday, May 13, 2008

Going to the Dentist...and they think it's stressful for adults!

No we're not prepping for brain surgery! Just a trip to the dentist.

Going to the dentist is no fun for any kid, but it's an event for ours. Nicky doesn't get the number one instruction for success at the dentist "open your mouth and hold still".
All he is thinking is "What the heck are you people doing?", "Why would I want to hold still with this stuff in my mouth?", and "How do I get out of this crazy place?". I bring books and the doctor has a VCR. Distractions and promises of trips for chicken and french fries are my tools to help keep is mind off what's happening or how long it's taking. That said, Nicky has a great dentist and although this visit was not easy, we got through it and Nicky got the care he needed.

About the Day: We were in the dentist office for 2.5 hours. Nicky had to sit for a full set of X-Rays, followed by having a small camera in his mouth take additional pictures and then he was strapped down on the papoose board so he could be still enough to have 3 teeth pulled! The papoose board looks scary, but we've used it with both our dentist and neurologist and it's really helpful when a child needs to be really still. Nicky had to hold very still to have three teeth pulled because his baby teeth in the back would not fall out to make room for his permanent teeth. This was causing the permanent teeth to find a way out and they were poking out of the side of his mouth. His mouth looked more like a shark’s mouth with two rows of teeth than a little boy! I’ve had a few moms’ tell me that our kids tend to have problems with their teeth growing in right. One more thing I never considered.
At one point yesterday he had adults hovering all over him. One trying to get the slides in his mouth, one trying to keep the slides in his mouth and hold him still while one ran and pushed the button for the X-ray machine and my holding his hands so he didn’t smack anyone. Side note: with all of the technology we have today can’t somebody invent a better way to take an oral X-Ray. I hate those slides that poke your mouth. I have a hard time staying still…how the heck do you expect little kids to do it. Can’t believe we haven’t found a better way!
Nicky was stressed and so was I, but it all worked out and it’s much better than the early dental days. We have a great dentist and her team is so patient. Our dentist has a child with special needs, so she really gets it and it makes a major difference in how she views our kids. She loves them and she accepts them and it really shows. He is kind and calm no matter what Nicky does, and so is her entire staff. Nicky feels it and so do I.
I’ll never forget our 1st trip to the dentist.
We were still adjusting to our reality in the world of autism; seizure disorder, behavior intervention, speech therapy, school struggles, occupational therapy, doctors, and all kinds of gastro internal problems. I do remember that the furthest thing from my mind had been dental check ups. Besides brushing his teeth, I didn’t think about them. With all that was going on teeth were not on my radar.
Then he started to only chew on one side of his mouth I began to wonder, was it a sensory issue or did he have a dental problem? One month later Nicky was in a dentist chair, the person standing beside him was not a dentist but an anesthesiologist preparing to put Nicky under so the dentist could work. Nicky had to be fully sedated because at age 5 he was about to have one root canal for sure, a second depending on the severity of the damage, one tooth pulled, two cavities filled and a spacer put in where any teeth were pulled. The procedure was expected to take 1-2 hours. AMAZING!!! It is not typical for a kid his age to have these dental problems but Nicky had been suffering for two years with diarrhea (brought on by food allergies and yet unknown gastro stuff) so Nicky’s teeth were fragile. Not unlike the like the rest of his body, his teeth were not getting good nutrition to develop and they were weak. All things I never considered with so much going on. I was just glad Nicky go to sleep through it and I was now aware that I had to add "Teeth" on my priority list....my very long list. Ugh.