Beatitudes for Special Families

shadowIn honor of Mother’s Day, I’d like to run this guest post by Ann O’Keeffe Rodgers, founder of Hope Springs Florida, a respite home for families touched by autism, located in Jacksonville, Florida. Thanks so much, Ann!

As Christians, we learn about the early Christian martyrs who gave their lives for Jesus and His kingdom.  Those who chose death rather than deny their Lord and Savior are known as the “red martyrs.”

And yet, there are also those who give up their lives every day, imitating Jesus by giving themselves wholeheartedly in loving service. Theirs is a “white martyrdom,” a slow and painful way of taking up their cross. One example is Pope St. John Paul II, whose quiet endurance of Parkinson’s at the end of his life showed the world what it means to lay down one’s life each day out of love for God.

Through work for Hope Springs Florida and those with special needs, I have been so blessed to meet many other “white martyrs.” They give of themselves joyfully and willingly, out of love for their children. I have been blessed to meet, know, and be friends with them. Through their example and their friendship, they inspire me constantly to return to the Beatitudes proclaimed by Jesus in his Sermon on the Mount, recorded in the fifth chapter of Matthew.

Blessed are the peacemakers, for they will be called children of God.” Blessed, too, are the men and women who get up every morning before their child wakes, and sacrifice for their child’s peace of mind.

“Blessed are the poor in spirit, for theirs is the kingdom of heaven.” And blessed as well are parents who work two, sometimes three jobs to make ends meet for critical therapy services for their child.

Parents who sleep on the floor of the pediatric hospital because there is no other place for them to sleep that night, while they wait for treatment for their child, remind me: Blessed are the meek, for they will inherit the land.”

Blessed are parents who are misunderstood by members of their own church community, and who often feel marginalized by others, who do not see their integrity, character, and strength. God sees the truth, and has promised: Blessed are you when they insult you and persecute you and utter every kind of evil against you [falsely] because of me.

Blessed are parents who struggle to meet the needs of their neurotypical children as well as those with special needs, mourning the fact that these siblings’ lives will not be the same as those of their peers. Blessed are they who mourn, for they will be comforted.”

“Blessed are the clean of heart, for they will see God.” Blessed are the staff of doctor’s offices, behavioral therapists, speech and occupational therapists, special education teachers, and guidance counselors who recognize what a privilege it is to work with these exceptional children, who are absolutely without guile or deceit – simply unconditional love.

Blessed are the staff at organizations like Catholic Charities, Jewish Family Services and other faith based organizations that are committed to serving this population, when they could be working in another business sector making a much heftier salary. God says to you, “Blessed are they who hunger and thirst for righteousness, for they will be satisfied.”

And finally, blessed are the behind-the-scenes supporters of these children who do not want recognition for their acts of service, gifts of talent or treasure, or their supportive presence alongside families who are struggling with the burdens of caring for these children. Blessed are the merciful, for they will be shown mercy.”

Years ago, standing in Saint Peter’s Square at Easter, on the very same ground once soaked by the blood of the martyrs who had given their lives for Someone they had only heard about, it was clear to me that the Church is bigger than any one human being.

Today, thirty years later as a parent of four children – including one who has autism – I am an advocate for children with special needs. Just as I saw in Rome, I see in the Church today signs of grace and mercy – and also reminders that, as a Church, we must continue to find new ways to receive as Jesus did the “least of these,” embracing the culture of Life to its very fullest, so that no one is left behind.

Me with JoeyAnn O’Keeffe Rodgers is the founder of Hope Springs Florida and program administrator at Huntington Learning Centers in Jacksonville, Florida. Hope Springs Florida serves families touched by autism, strengthening bonds through respite services in a vacation environment. You can find more information about Hope Springs Florida on Facebook (their website is currently under construction.)                 

 

Miracle Monday: “When Autism Speaks” with Ellen Bry

lostandfoundRecently CatholicMom.com ran an interview that I did with Ellen Bry, star of “Lost and Found Family.” Ellen is the mother of three grown children, including two sons with autism. I was delighted when Ellen took time to chat with me about what it’s like to raise — singlehandedly — two young men with special needs.

One of the greatest challenges of parenting the special-needs child is managing one’s own expectations. “There’s a kind of smugness among very bright, accomplished people, an engrained bias that being bright and accomplished is somehow being ‘better.’ When you have special-needs kids, you realize immediately that intelligence in merely another gift that you’re lucky enough to get – but not a God-given right. It’s surely as much of a fluke as being good-looking. A sharp intellect is a gift, nothing you deserve, just something you’re lucky to have. Other human qualities are more important – love, decency, compassion, goodness, and kindness. My two special-needs kids have those in abundance.” When parenting the special-needs child, love means learning to appreciate each child for who he is, rather than what he can or cannot do.

Want to read more? Just head over to CatholicMom.com and check it out. While you’re there, you might appreciate another CatholicMom.com post, “Prayer for Families Touched by Autism.”

Top 3 Things Parents of Autistic Children Can Do

Valerie_VanamanYesterday I had the opportunity to speak with a remarkable woman, special-needs legal advocate, Valerie Vanaman.  A senior partner at Newman, Aaronson, and Vanaman, for the past forty years Valerie has defended the educational rights of special-needs children and their families.  She has also served as a teaching fellow at Harvard Law School and as an attorney for such public interest organizations as the Children’s Defense Fund.

Yesterday I spoke with Ms. Vanaman in connection with my article on “Lost and Found Family” and its star Ellen Bry, which appeared today at CatholicExchange.com. Ellen had spoken to me in glowing terms about Ms. Vanaman’s lifetime of service to the special-needs community (Ellen has two grown sons with autistic spectrum disorders), and suggested I speak directly with Valerie. I was delighted when she took time to chat with me by phone. 

I asked Valerie to suggest three things that parents of autistic children can do for their kids. She said:

1.  Make sure you are confident in the assessment data you have. If you’re not confident that your doctor or advocate has a complete picture, you must speak up!  “Autism comes in many forms and styles, with many different needs. It is not helpful to approach it too broadly or generally. Autism crosses a wide span of people and issues and needs. You can’t lump them all together. In addition, your child’s needs will often change – have you kept up with them?”

2.  Look at the array of services and resources available to you, and explore them all to find the one that best suits your situation, your child. Two good places to start are online resources such as “Autism Speaks” or the “Council of Parent, Attorneys and Advocates.”  Groups such as these can be especially helpful in getting a “big picture” on what is working for children with autism on a national scale. “All efforts at generalization in this field do a disservice,” observes Vanaman. “Special needs children can benefit from integrated classroom situation, if the school is committed to modify the curriculum. A child who is going to have difficulty getting academics but likes being around his peers, may benefit from leaving him in the classroom even though all the drilling in the world won’t dramatically increase the student’s ABC ability. On the other hand, there are children for whom leaving the main stream for a portion of the day might provide some great benefit.”

3.  Find a local support group. There is no substitute for parent-to-parent communication, or finding a local support group that can give you the inside track on what is available in YOUR area. “Parent organizations are essential. At the end of the day, it’s the only way to know how to think about the problem. Most parents are thrown into the situation of having a child with an autistic spectrum disorder – it’s not the child you expected to have. How do you get your head around it? That’s a significant issue that parents need, to sit around with another group of parents to learn how think about it.”

Since the passing of the 1976 “Education of Handicapped Children Act,” Valerie has been a fearless defender of children who were once marginalized, working first with the Children’s Defense Fund and later in her own practice, located in Sherman Oaks, California. During that time she has seen the emergence of many therapies and treatments that have greatly improved the quality of life for her clients. Ultimately, however, it is the parent who must safeguard the needs and best interests of the child.

“Particularly when the child is young, if you’re not seeing progress, you need to find out why. You can’t just keep trying the same thing. If a particular therapy or approach is no longer working after 6 months or so, you may want to find out why not.”

New Theory Of Autism Suggests Symptoms Or Disorder May Be Reversible

“The central tenet of the theory, published in the March issue of Brain Research Reviews, is that autism is a developmental disorder caused by impaired regulation of the locus coeruleus, a bundle of neurons in the brain stem that processes sensory signals from all areas of the body.

“The new theory stems from decades of anecdotal observations that some autistic children seem to improve when they have a fever, only to regress when the fever ebbs.”

Read the full story here: New Theory Of Autism Suggests Symptoms Or Disorder May Be Reversible

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The Face of Autism, the Face of Sorrow

As Mary Ellen Barrett and her family grieve the loss of their 14-year-old son Ryan, who had a seizure and drowned while on a camping trip with his father on Friday, I wanted to encourage my readers to continue to uphold this family in prayer.

To that end, I’d like to link to this beautiful poem that Mary Ellen wrote in tribute to her son last April. It expresses with simple eloquence what it is like to raise a child with autism. Also, here is Ryan’s YouTube tribute.

I’d also like to give you this link from Regina Doman’s website, entitled “20 Things You Can Do for Those Who are Grieving.”  Hers is the voice of sad experience, having endured the accidental death of a young child herself.

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