A day in the life of a single mom raising a teenager and a child with autism. I believe that it's not what we receive, but what we give away that defines us. I want to give away all that I have learned and experienced in hopes that it will help families raising a child with autism or any disability. This is my candid journal where I open up my world and share my joys, knowledge, lessons, disappointments, challenges, frustrations, fears and successes - one day at a time.
Wednesday, November 24, 2010
Typical Teenagers Tackle ASD...Really?
11th graders at a local high school took on getting educated about ASD. First they read The Curious Incident of the Dog in the Night-Time (a book written by a young man with ASD) next a discussion and lastly a Q& A style assembly where they interacted with a panel of stake holders in the autism community. As I sat in the auditorium preparing to participate I realized; I've talked to elementary school kids, parents, professionals and all kinds of adults, but never teenagers! I thought, I'll be informal, chill and it will be fine. Then I opened with a "Rain Man" reference that was met with blank stares, and FEAR shot through me! I took a deep breath and just started talking. To my astonishment, no one left the room and I didn't hear a single snore. The students were listening! The students questions were genuine, thoughtful and they made me feel better about the world I will one day leave my son to. I thank you North-ridge Academy for presenting this program and helping teenagers grown into more compassionate adults.It's my hope that other schools will follow your lead and create similar programs. :) I shared these questions with my teenage daughter who was shocked at their depth and honesty and now I am sharing them with you!
Questions to the panel from the Students – Responses by Donna Ross Jones
Why is it important to know and comprehend what autism is?Michael Sweeney.
Big Answer: Because we are all connected and we will all come in contact with a person with ADS, and some of us, if we’re prepared will make a difference. An example; this summer a young man with ASD was fatally shot by LAPD officers when he did not respond to their commands. Instead in “classic” ASD fashion he began to fumble with his belt. The police didn’t notice his ASD behaviors and they shot and killed him because they assumed he was going for a gun. If they had been able to recognize a person with ASD, or if a bystander who recognized ASD had intervened a life would have been saved. The ASD population is vulnerable and most people, even though they have heard the word Autism, do not recognize ASD traits and they do not comprehend how the illness affects behavior. Knowledge is power, knowledge will save lives that why it’s important.
How far are scientists on finding a cure for autism?Ryan Vavla
Everywhere and nowhere. Autism receives less than 5% of the research funding of many less prevalent childhood diseases, which directly impacts progress. To date, we have eliminated some possibilities, but we have not found a cause or cure. We have learned that there are probably many different types of autism, instead of one. We know there is not a single “Autism Gene”, and we know that the environment plays a role. Autism has been said to be as complicated as cancer, so it appears we have a very long way to go.
Why is it that a person with autism is able to perform at a high level when given an impossible task, whereas, given a simple task, they can’t do it? Norman Rodriguez
Because on each individual different parts of the brain are affected, and the many different degrees. We call much of what you have described “Splinter Skills”. Some skills, like a muscle get lots of exercise because another does not work. For example, Nicky’s not so good at processing language, but he know’s if I am within a mile. He can be sound asleep, I tiptoe past his room and he say’s MOM. Or I might drive into the driveway while he is upstairs in a bath and he will say “mom, mom’s home”. He’s developed a third sense that we have, but probably don’t use. In cases where there is really extraordinary performance, I have read that seizures changed the brain pathways resulting in savant type brilliance.
Is autism hereditary?Madison Stonefield
The current understanding seems to be that some types of ASD may have hereditary factors or what doctors/scientists call pre dispositions, but NO there is not a single AUTISM gene, that you detect and it is then passed on.
How big of a chance do we have that our kids might have autism?Brandon Bowen
If you have a boy the current change is 1 in 80, if you have a girl it’s 1 in 100. If you already have one child with ASD statistics show that child has a 50% chance of having ASD
Does autism worsen or get better with age?Stephanie Peraya
Both. Some kids are greatly improved by early intervention, some improve less. Some do great and then for no apparent reason decline. We do know that early intervention will improve outcomes, but how much is different for everyone.
Are people born with autism or do they develop it?Serah Florita
This is one of the million dollar questions that is at the core of many debates between families, doctors and scientist. Right now it seems some children show clear signs as early as 6 months, others seemed to develop normally and then developed ASD. My guess is that we have more than one illness, some children are born with, some that the result of some pre disposition and are triggered by a medical or environmental event.
How is autism treated [most effectively]? Selenna Rullanas
The gold standard of treatment consists of the following: Speech Therapy, Occupational Therapy, Physical Theraphy and Behavior Theraphy (ABA). These are NOT the only treatments they are the treatments the professional and medical community have gathers the most data on, which shows their impact.
Questions for Donna Ross-Jones
How long did it take for Nicky to finally response to what you say? Monica Catzin
We are still working on his ability to respond. It is a slow process that began when Nicky was first diagnosed with ASD at 27 months and it is still unfolding. Like all of us Nicky’s responses are a combination of actions and words. He first began responding to me by verbally repeating the ABC’s as we exchanged ABC flash cards, then he was able to learn sign language to respond to my words, then he began to use a few words combined with cards and sign language. Now he loves to write. He’s a great speller and reader so writing things down is a great way to get a response.
Are you worried about Nicky’s future? Jose Ortiz
Yes, I am. Not just because of “Nicky” but because of the world. He’s happy right now, and he’s safe. I’m here to care for him and he is surrounded by people who love him. But outside of the insulated setting we have created for Nicky, the world is a different story and the potential dangers seem endless. Because he looks like any kid, on site people don’t know that he lacks the basic social skills needed to survive in a community. If a police officer shouted “Stop!” Nicky would probably not respond, he would probably begin jumping or flapping which could get him arrested, jailed or fatally wounded. His inability to comprehend boundaries makes his a target for physical abuse by men, women and even caregivers. Our social systems are running out of funding and programs are holding on by a thread. I worry about what will happen when I can no longer speak for him. I worry when I look at our countries financial woes, as a “cost saver” will our society return to the days of abusive asylums, where naked occupants are lined up against walls and sprayed with fire hoses once a week instead of getting baths. I worry, will anybody care.
How do you get Nicky to settle down?Jacob Vallejo
The best way I can! LOL. Nicky has been receiving behavior therapy since he was diagnosed. These therapies have been working on teaching himself control, to keep from getting too agitated, and techniques to calm himself when he is getting agitated. His programs also teach me what they are doing. I’ve learned to help Nicky to settle down by using the strategies for example: having him take deep breaths, reminding him what he earns if he keeps a calm body and is not aggressive, writing what is happening or what will happen to help him understand “what’s next” and moving him into activities he enjoys like puzzles, word search, drawing.
How did you prepare for Nicky’s situation when he was diagnosed with autism?Aurea Cunanam
When a child is diagnosed with cancer or diabetes parents are given a protocol, told what to do, who to see, what to expect, how to manage the illness and so on. Systems come into place to support the child and the family, this is not the case for autism. Sadly, when Nicky was diagnosed there were no established systems of care. Instead I fought to find out what was wrong and when he was finally given a diagnosis, I was sent home to learn for myself how to treat him. So, I didn’t prepare I just leaped in the water and started to swim. Thanks largely to parents who were in my same boat becoming advocates it’s easier to information, help and guidance early in the process.
What you do is inspirational, but I can tell it is not always easy. How do you handle this every day?Stephanie Soriano
Your question is a little like the question “How do you eat an elephant?” the answer “One bite at a time”. I try and take my life in small bites so I don’t get too overwhelmed. I work hard to only deal with what I know is true, which means resisting my brains temptation to worry about or create problems that hasn’t happened yet. On really bad days I find someone else to help that has it rougher than me, there is always someone who can make your situation look good. Helping, helps me feel better.
Nicky has taught me how many things in our life we do not control and how blessed I am that I can control much of my body and minds. So I do that, control myself, and do the best I can. I strive to be the best Donna I can be, forgive myself when I fail (which is often) and just keep going, because that is all I can do. I believe that, I live by that.
What sacrifices do you have to make if you have a child with autism? I am sure there are many, but it’s not healthy for me to look at any part of what I do as a sacrifice. That does not mean I am unaware of the magnitude of what it takes to meet his needs or what it takes for me to rise to the occasion. However, I know if I focused on me, I might not be able to do what I need to do.
Does your daughter ever explain her feelings to you? Natalie Mendoza
Yes she does, but not as much as this mom would like. She’s a quiet, private kid who was given a mom who is neither…poor kid. That said, there are sibling workshops and groups that she participated in as a kid and she has had close friends who also have disabled siblings, I think that helps her a little. Has your daughter ever posted a blog about her brother from her perspective? No, not yet. I hope one day she will.