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.”

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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.”

“Lost and Found Family” Today on Teresa Tomeo’s “Catholic Connection”

lostandfoundThis morning I’ll be a guest on Teresa Tomeo’s “Catholic Connection” to talk about my upcoming talk at St. Thomas the Apostle Parish in Ann Arbor, Michigan. The talk will be on September 17 at 7:30 pm, and will include representatives from area foster care and adoption agencies to answer any questions you may have.

On the radio program, I”ll also be talking about a special family movie about adoption and foster care, called “Lost and Found Family,” starring Ellen Bry. The movie has a limited released (may be ordered on DVD) on September 15. I had a chance to interview Ellen by phone yesterday, and talk with her about the movie and about her work with “Autism Speaks,” a charitable organization that raises funds for research and treatment of austitic spectrum disabilities. Stay tuned!

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.

Urgent Prayer Request: Autistic Child Missing

Please join me in prayers for the safe return of Mary Ellen’s autistic son, Ryan Barrett, who was separated from his father during a camping trip.

Let your mercy be on this family, O God, as they place their trust in you!

Update: Ryan’s body was found earlier today (Friday). Please pray for Mary Ellen and her entire family as they grieve the loss of their teenage son.

Pray on Autism Sunday!

CatholicMom.com just posted my column about Autism Sunday, a reflection on “I Am Sam.”  Check it out!

prayerToday is the International Day of Prayer for Autism and Asperger’s Syndrome in the UK. Let’s join our prayers together!

Pope Benedict XVI wrote to the co-founders of Autism Sunday, Ivan and Charika Corea, invoking his apostolic blessing on the autism community. For more information, click here.

Lord, today we remember families touched by these chronic illnesses.

In their isolation, may they experience Your presence.

In their frustration, may they know Your peace.

In their sorrow, may they feel Your joy.

Calm their anger with Your infinite love.

Together with our brothers and sisters all over the world, we thank you for those you have entrusted to us, for as long as they are with us. Teach us to measure each other not by our challenges, but by our blessings.

In the name of the Father, and the Son, and the Holy Spirit, Amen!