To view go to: http://www.pbs.org/wnet/religionandethics/episodes/october-16-2009/autistic-poet/4595/
Be kind, for everyone you meet is fighting a great battle.
Attributed to Philo of Alexandria
By Ginnie Breen
My daughter Elizabeth’s battle with autism is one of body, mind and spirit. So naturally, our partners in the struggle to overcome autism have been doctors, teachers and God, in whom we have great faith.
I value this opportunity to share a few of the many hard fought lessons learned in this battle, especially with parents whose children have only recently been diagnosed with autism. We remember being overwhelmed and heart-broken, especially since we had two of our children diagnosed simultaneously. Elizabeth’s older brother, Charles, also has autism with his own unique set of challenges.
Body
The mothers of autistic children often ask me: what medical interventions have helped our children? Is it the special diets, supplements, hyperbaric oxygen therapy, chelation, homeopathy, neuro-feedback therapy, vision therapy, porcine whipworms, anti-fungals? The list goes on and on.
It’s hard to say because many of our biomedical interventions have overlapped. Time is of the essence and we don’t have the luxury to try just one approach before we try the next. Nor can we wait for the medical community to do double-blind studies to verify what works. I just know that the children are getting healthier over time and I believe that, with intensive interventions, there is a path to full recovery.
As a first stop for parents, I highly recommend Defeat Autism Now (DAN), an organization that trains doctors in the latest treatments that are helping our kids. Their website, www.defeatautismnow.com, has a section which allows you to find a DAN doctor near you. It is important that you are comfortable with your child’s doctor and that he or she has significant experience with autism. Most DAN doctors see parents as partners and work closely with them doing numerous tests and interventions. To educate yourself in the DAN protocol before your first visit, I recommend the book Autism: Effective Biomedical Treatments by Jon Pangborn, Ph.D and Sidney Baker, M.D. The DAN website also has videos of recovered children which will inspire you to move forward and to keep at it when times get tough.
As the Religion & Ethics Newsweekly (www.pbs.org/wnet/religionandethics/) about Elizabeth reported, the treatment of autism is still in its infancy and no single physician or institution has all the answers. Even if your doctor is among the best specialists in the treatment of autism, you should seek out other experts. Many autistic children suffer from a wide range of physical issues, such as allergies and difficulties in digesting food. Seek out experts in nutrition and gastroenterology who have a focus on autism. If the problem is verbal, find a speech pathologist. Each child’s “case” is unique. Some autistic children have been cured with special diets alone. For most, however, the journey is a long one. I urge you to keep reading and researching on your own. There is a wealth of information on the Internet, but I would also urge you to talk with other parents informally or in support groups. Compare notes and see what is working for them. Autism is treatable and beatable.
Mind
For all these years, we have devoted an equal effort to Elizabeth’s education, to reach and improve her mind. In study after study, early intervention is critical to a child’s long term prospects. (That being said, I believe that it is never too late to reach the mind of a person with autism.) We began a home-based Applied Behavioral Analysis (ABA) program recommended by Elizabeth’s doctors when she was diagnosed at age 2 ½. ABA is a widely accepted teaching method which breaks down learning into small, discrete components as a building block for learning. In most states, if your child has been diagnosed with a learning disability, your local school district must provide for “appropriate” services beginning at the age of three. But, the question of what constitutes “appropriate” is not well defined. This is a good time to begin your relationship with the child study team at your child’s school. Your child’s success depends on your ability to work with the educational team and advocate for appropriate services.
As your child’s education shifts to a classroom setting, there are new challenges. Our goal has always been to educate Elizabeth in a typical, “mainstream” classroom, rather than in special education classes, so that she can reach her fullest potential both socially as well as academically. Our path with Elizabeth went from our home-based ABA program to a school district-based special education class when Elizabeth was five years old. Your child study team will have a recommendation as to the best setting for your child, but always remember you know your child best. If you believe that your child should be mainstreamed, find a great teacher and committed aide and put together a plan. At age six, Elizabeth was mainstreamed in first grade, despite the child study team’s recommendations for her to remain in the special education classroom. There were many challenges but we made it work and Elizabeth is now in middle school, changing classes and thriving in her studies.
Whether working with special or mainstream education, I have found that teachers are great partners. With daily communication logs, emails and monthly meetings, we work on solutions together. Many teachers, even those in special education, may not have much experience with autism. Before the start of the school year, identify who your child’s teachers will be and meet with them to discuss your child and answer their questions. Give these teachers books, Internet sites, or other materials to help them understand the range of issues that our children struggle with, from sensory integration issues to communication methods. The books You’re Going to Love This Kid!: Teaching Students with Autism in an Inclusive Classroom (for younger children) by Paula Kluth or Autism Life Skills (for older children) by Chantal Sicile-Kira are excellent gifts for teachers. At our monthly teacher team meetings we speak openly about our challenges and we celebrate our victories.
If your child is diagnosed with autism, most school districts will assign an aide to assist your child one-on-one in a mainstream classroom. I have learned from experience that this aide plays a pivotal role in your child’s education. Because your child and the aide will work closely throughout each day, I suggest you get involved in the selection process and help find someone who is caring, patient and persistent. Elizabeth has been blessed by having the same devoted aide for nine years. One way to retain an aide is to show your appreciation often and devote all the resources that you can to help train and compensate her for her extra efforts.
For non-verbal children with autism, finding a communication method that allows them to learn to write is crucial. We found the Rapid Prompting Method (RPM) was the breakthrough that led to all of Elizabeth’s subsequent successes. You can buy the book Understanding Autism Through Rapid Prompting Method by Soma Mukhopadhyay or visit her website, www.halo-soma.org to sign-up your child for a visit to their Austin, Texas facility. Because of her success, it is difficult to see Soma but she has other capable personnel at the facility. If your child is non-verbal and at least five years old, please try RPM. It has made all the difference to Elizabeth and hundreds of other children.
Spirit
Equally important, as parents of special needs children, we must keep our spiritual lives nourished. We cannot fight and win this battle alone. I have found strength in my faith in God and in a small circle of friends and family who celebrate our victories and lift me up in the dark times.
We have sought out those who practice healing prayer and traveled great distances to see them on multiple occasions. It is a mystery why God’s healing power reaches some and not others. When we asked Elizabeth how she felt after our first trip she responded on her letterboard, “I felt hope and peace.” That is the healing that we have thus far received: hope and peace to carry on.
Living with Elizabeth and her autism has led me to ask many questions about life. Where is God in all of this? Is He here with us in our suffering? Are we being healed because of His presence or despite His absence? How do we balance life in the midst of such turmoil? I will spend the rest of my life seeking the answers to these questions. What I do know is that where there is love, there is God and where there is God, there is hope.
As proud as we are that Elizabeth’s achievements brought her into the spotlight in the Religion & Ethics Newsweekly report, we know that underneath it all she is not unlike your child with autism. We believe that these children are bright and have a deep spiritual connection to God and nature. All our children struggle to lift the veil of autism. With intensive biomedical and educational interventions, and God’s help, each of them can succeed in lifting it. We believe this with all our heart, because we have witnessed another set of successes in Elizabeth’s brother Charles, in his own battle with autism. Unlike Elizabeth, Charles is able to speak but he struggles with other academic and social issues. And while he is not a poet, his great efforts with the assistance of his own wonderful education aide, have earned him success in mainstream public school. We love and accept Charles and Elizabeth wholeheartedly. Despite their challenges, they are happy children who deserve nothing less than all our efforts to heal them.
Elizabeth’s poetry motivates me to keep fighting the battle to heal her body and stimulate her mind. We hope that it serves as inspiration for you as well. We have set up a simple website in order to stay in touch so that we can be strong together. Our first project is to email out Elizabeth’s Poem of the Month for those who sign up at Contact Us on this website. Please bookmark the site and check back from time-to-time so that we may share information and help each other in this journey of body, mind and spirit.
Me
I sometimes fear
That people cannot understand
That I hear.
And I know
That they don’t believe I go
To every extreme
To try to express
My need to talk.
If only they could walk
In my shoes
They would share my news:
I am in here.
And trying to speak everyday
In some kind of way.
by Elizabeth Mary (age 9)
