One of the reasons the numbers might have gone up, according to the CDC, is better tracking of children who are minorities — specifically Hispanic and black. The numbers come from 11 communities in Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee and Wisconsin. They represent about 8 percent of 8-year-old children in the United States.
Austin researcher Laurence Becker has been studying these savants. In May he’ll be premiering a documentary on seven savant artists. “Fierce Love and Art” will premiere at 7 p.m. May 12 at a theater that is still being finalized. Tickets are $10 a person, $25 for a family. Go to fierceloveparents.com for more information.
The CDC says more needs to be done to identify kids with autism earlier in their lives so that therapy can begin sooner.
It gives these facts:
Fewer than half of the children identified in the Autism and Developmental Disabilities Monitoring Network received their first autism diagnosis by the time they were 4 years old.
Although 85 percent of children with autism had concerns about their development noted in their health records by the time they were 3 years old, only 42 percent received a developmental evaluation by that age.
This lag between first concern and first evaluation may affect when children with autism can begin getting the services they need.
Read more about how to tell if your child might be showing signs with these two stories:
Whitney Ellenby writes her truth about raising a son with autism in “Autism Uncensored: Pulling Back the Curtain.” ($19.95, Koehler Books) Not everyone is going to like it, and that’s just fine with her. In fact, she’s been reviled for writing what she’s written.
Ellenby was a lawyer in Washington, D.C., working in the Disability Rights Section of the Department of Justice, when she and her husband, Keith, became pregnant with Zack, who is now 17.
Ellenby doesn’t pull any punches about the first five years of Zack’s life. When he was born, she had trouble connecting with him. He didn’t sleep well. He didn’t respond in ways she thought he should. His expressions were just flat. He never pointed for anything. Yet, how should she know this wasn’t normal? He was a first child.
She doesn’t hide her bitterness when the diagnosis came, and with it, a recommendation for 40 hours a week of therapy. This therapy came with a false hope that maybe he could be trained to alter his behavior so much that he appeared normal.
She dutifully brought her son to Applied Behavior Analysis therapy for months on end. Some behaviors would get better for a time period, or he would move from one behavior to another, but she became aware that it wasn’t working, that he hated the therapy, that it felt like punishment.
She writes that felt like she was losing herself. She looked at her work clothes and realized she was no longer that person who wore those. She felt like she was becoming more and more isolated. She couldn’t take Zack to public places because he would freak out. He started doing things like smearing his poop all over his room at night or eating non-food items. She writes “So this is my life. I am a well-educated woman. I am an accomplished civil rights attorney. I am a woman who spends hours every night on her hands and knees scraping feces off walls.”
The book, she says, was written for parents like her who are struggling and in pain. “When you decide to become a parent, it’s a leap of faith,” she says. You expect a normal baby. You don’t expect a Zack. “It’s not natural to have a total surrender of your identity,” she says. “Are you expected to be happy and thrilled or is there a natural amount of anger and bitterness?”
She has experienced backlash after writing the book, she says, mainly from some other parents of children like Zack and from adults with autism who are high-functioning. “It’s just terrible to tell my truth,” she says, of the messages she has received. “I’m offended that your offended,” she says about her critics.
The way she felt, she says, is very normal. “It’s helpful to acknowledge it,” she says.
Ellenby spent five years trying to figure to figure out what went wrong and blaming herself as well as trying to find a way to make him more like a neurotypical kids. She wants parents to “shed the shame. Don’t waste time blaming themselves,” she says. “The numbers are huge and we don’t know why. We don’t know what’s causing it, but it isn’t anything we intentionally did.”
The book takes readers through those dreadfully frustrating years, but there are triumphs for sure. The highs were incredibly high, and the lows were incredibly low.
One of the things Ellenby did that experts discouraged her from doing was exposure therapy to the public spaces that Zack feared.
Ellenby created a routine of bringing Zack to places like the movie theater or a “Sesame Street Live” performance. Zack would have an all out tantrum and often the audience would be hostile to Ellenby until she started explaining to them what was about to happen. She would tell them that her son has autism and that he is afraid, but if they will just listen to him scream for a few minutes, she would talk to him and tell him what was going to happen, and suddenly he would realize that Elmo is on stage and that’s magical or that a movie is going to start and that’s pretty cool.
“Our kids can do so much more than they think they can do,” she says.
Through doing this, Ellenby made sure that Zack was able to go on the high slide at the water park, even though she was too chicken to follow him down, or go to a rock concert.
Her work with Zack also inspired her to create a nonprofit organization in the Washington, D.C., area to offer sensory-friendly events for families of children with autism.
Instead of chasing a cure, she’d like national organizations to build in more services for families, to advocate for more opportunities for people with autism. She’d like autism to be treated like any other disability, with accommodations in public places.
“Our kids are innocent travelers with a disability that makes the world hard to navigate,” she says. “If they are flapping, own it. Don’t feel ashamed of it. Get them out into the real world. Don’t keep them at home because you’re embarrassed. The only way to crystallize skills is to practice them in the real world.”
One of the things she wants to encourage families with a new autism diagnosis to do is to try lots of therapies, but to trust their gut. If something isn’t working or if their child plateaus, try something else.
She wishes she had done more with real world experiences and playdates when Zack was younger rather than him spending his time in 40 hours a week of therapy that didn’t work.
Zack started out in regular classes with some support, but then as the gulf between him and his classmates became wider and wider, it became painful for Ellenby to watch. She had to get over the idea that the experts had given her early on that Zack could “recover” from autism. It was about letting go of the fantasy and pretense. Once she accepted that he’s never going to “recover,” and “it was strangely liberating,” she says. “We acknowledged we had set the bar at an unrealistic place.”
For her, that means she looks to a future of Zack living with assistance and maybe one day having an entry-level job that works for him.
“This is who he is, this is who he’s meant to be,” she says. “Call the thing what it is and ask for what you need.”
Confession, I hate these days. Everyone gets amped up over a couple of tests. Kids who normally do fine on a test are suddenly nauseated or hyper or groaning with dread. They don’t want to be there, and I’m betting most parents don’t want to send them either, if given a choice.
For the second year, “Sesame Street” is honoring Autism Awareness Month with a special episode that will be shown both on HBO and on PBS. Typically, episodes appear on HBO first and then after the season is over, they appear on PBS. Last year, “Sesame Street” added Julia, a little girl who has autism, and explained to kids what autism is and how not to be afraid of a kid like Julia.
On Monday at 7 a.m. on HBO and 10 a.m. on Austin’s PBS affiliate KLRU, “Sesame Street” is showing the episode “Shape Hunt.” The kids and monsters on Sesame Street team up on a scavenger hunt looking for shapes. When the other characters get stumped, Julia helps them find shapes in places the other monsters and people would never have thought of. The episode celebrates Julia’s differences rather than seeing them as a challenge.
“Sesame Street” is also introducing other autism-related resources this month:
“Forever Family,” is a book that introduces Julia’s family including her parents and big brother Samuel. You can find it in English and Spanish on sesamestreet.org/autism and on ebook platforms.
Sesamestreet.org/autismhas four videos with Julia, Grover and Rosita in which Julia freeze dances with her friends, teaches Grover about patterns, celebrates families with Rosita and discovers different ways to say, “Hello.”
The site also has digital routine cards to help kids with learning differences go through step-by-step events such as Julia getting a haircut or watching a sporting event, Elmo going to a dentist and Rosita going to a birthday party.
Penguin Random House’s Brightly Storytime introduced a read-along video storybook “We’re Amazing, 1, 2, 3!” with Julia and Abby Cadabby.
Four-year-old Matthew Brown stares into the screen of the Welch Allyn Spot Vision Screener held by Austin Downtown Founder Lions Club volunteer Rudy Munguia. Matthew can see flashing lights, but, of course, Munguia makes it fun and tells him to look for the little bird. Does he see it?
This technique gets pre-kindergarten kids to really stare with their eyes open at the screener looking for a bird that isn’t there. The screener, though, is taking six different measurements of Matthew’s eyes. Within a few seconds, the machine is able to determine if Matthew has a vision problem and measure whether he is near-sighted, far-sighted or has an astigmatism, and how strong his eyes are. It screens for seven different conditions.
The kids in Matthew’s pre-kindergarten class at Widén Elementary School have all had their vision tested as part of a collaboration between Austin Independent School District and the Downtown Founder Lions Club.
The club screened pre-kindergartners in 32 schools last school year and will do 29 schools this school year. Kids in first, third and fifth grades receive regular vision screening using the eye chart you’re used to seeing.
With the screener, which doesn’t require kids to know their letters, younger kids can be tested in the hope that they will receive early intervention sooner. That will help them academically as they begin reading. Kids also can’t just memorize the letter sequence of the children who went before them. It also takes about 3 seconds to run the test using the Welch Allyn Spot Vision Screener. The traditional screen takes five to 10 minutes a kid.
Of the 12 pre-kindergarten kids screened in the afternoon at Widén, five were labeled as “bingos,” the word the Lions use to indicate the test found something wrong. They don’t want kids to feel like they “failed.” In the morning pre-kindergarten class, 10 students were screened and three had bingos.
In the schools last year about 20 percent of the kids screened, got a “bingo.” The club tells parents in the letter they receive that the test is 85 percent to 90 percent accurate, but Lions screening at Widén say they’ve seen it be as much as 94 percent accurate.
Sometimes, if an older student hasn’t been screened and the school suspects something is going on with his vision, the Lions will screen him as well. They also offer the school staff a free screening.
Last school year, the club screened 2,401 kids in schools and referred 485 kids to get additional screening from an eye care professional.
Sometimes, though, families can’t afford that next step, which is tough. Even with insurance, the out-of-pocket expense for eye care can be beyond what families can afford, says Widén principal Jennifer Pace. It does help the school identify kids who will need help. “I think it’s a real plus,” Pace says.
Sometimes the club takes the family under their wing and will pay for the eye care and glasses.
The screeners, which cost about $7,800 each, also are used by the club’s community outreach at events such as Coats for Kids and can be used in children as young as 6 months old. The club has a recreational vehicle, which it brings to community events for the screening. In those events, which screen all ages, about 30 percent of the people screened get a bingo.
One of the things that’s exciting about screening kids before they get to first grade is that some of the eye conditions are reversible if they are caught early, says club president Leonor Marques.
Remember the Zika outbreak of 2016? The Centers for Disease Control and Prevention released some statistics about the number of babies with Zika-related birth defects that year in the 15 states that had local outbreaks, including areas of Texas.
Here’s what it found:
3 out of every 1,000 babies born in those areas had a birth defect possibly associated to Zika in their mother
Half of those had brain abnormalities or microcephaly
20 percent had neural tube defects or other early brain abnormalities
9 percent had eye abnormalities without a brain abnormality
22 percent had nervous system damage including joint problems and deafness
But here’s the weird thing: Most of the babies born with Zika-related illnesses were born to mothers who didn’t test positive for Zika, either because they were not tested, were not tested at the right time or had no evidence of the disease in their bodies.
The CDC is expected the numbers to rise as data is collected on babies born in 2017.
As of Thursday, Mothers’ Milk Bank of Austin officially has distributed 5 million ounces of breast milk to preterm and medically fragile babies since it opened in 1999. The milk has been donated by more than 8,000 mothers, and been given to more than 29,000 babies from around the country.
“Every ounce of milk dispensed represents a compassionate gift from a donor, and a lifesaving gift to a recipient. Over the past 18 years, with the support of our community, we have expanded
our impact to serve babies in need across Texas and 22 other states,” said Kim Updegrove, Milk Bank executive director said in a press release. “We couldn’t save lives without the dedication of the mothers who donate their milk, the financial supporters who make sure that we have the resources to never turn someone away, and the volunteers who make our work possible.”
This has been a big year for the bank. It moved into a new 15,000-square-foot facility, its forth location in 18 years and the first one it owns. That facility will allows it to process even more milk as well as do more community outreach such as breastfeeding and parenting classes.
This year, it also added more milk donors than any year previously — more than 1,000 new donors.
Find out more about Mothers’ Milk Bank of Austin at milkbank.org.
The U.S. Postal Service has released a new stamp, which will benefit Alzheimer’s disease research. You’ll pay 60 cents for the first-class stamp, a 11-cent increase from the typical first-class stamp rates. Funds raised will go to the National Institutes of Health to distribute them.
“The Postal Service is proud to issue this stamp today to help raise public awareness of Alzheimer’s,” said Postmaster General Megan J. Brennan in a press release. “Proceeds from its sale will help support urgently needed medical research into this incredibly debilitating disease.”
The stamp is an update of the 2008 Alzheimer’s Awareness stamp.
This is the first stamp to raise funds for a cause. Last year, the Postal Service got approval to create the Semipostal Stamp Program. The next stamp will support post-traumatic stress disorder causes and be released in 2019. The Postal Service intends to release a total of five stamps before 2023.
Would you pay extra for a stamp that supports a cause?
Now, IBM is reimbursing employees up to $50,000 to cover services for each child with mental, physical or developmental disabilities. This $50,000 is in addition to what insurance already might cover.
This is huge. Having a child with different abilities is incredibly expensive. It can financially ruin families. Even with amazing insurance, parents are still spending tens of thousands of dollars a year in out-of-pocket expenses on co-pays, services not covered by insurance, equipment, parking, medications and more.
IBM also expanded many of its other parent-friendly programs, including:
Increased paid parental leave to up to 20 weeks (from 14 weeks);
Doubled paid parental leave for IBM dads, partners and adoptive parents to 12 weeks.
Parents can choose to take parental leave any time during the first year after the birth or adoption;
Reimburse up to $20,000 for eligible adoption or surrogacy expenses including medical costs associated with surrogate birth mothers.
IBM also offers expectant mother parking spots, child care and after-school center discounts, child care centers at its locations, and flexible scheduling for parents who need to pick children up after school, go to children’s events or appointments.
How is your company helping you be a better parent?
All kids love Halloween candy right? Well, not really. Some kids cannot have it because of medical conditions or food allergies.
Austinite Marty Barnes started a program with Mommies of Miracles, a support/advocacy group for families with children with complex medical issues, to create awareness that homes could treat more kids if they offered non-candy treats.
Barnes and her husband Tim later founded Casey’s Circle, a local nonprofit organization named after their daughter Casey, who had a brain injury at birth. She had cerebral palsy, blindness and deafness, among other diagnoses. The organization provides typical childhood experiences like birthday parties, Christmas parties to children who are medically fragile.
The idea of providing nonfood treats has caught on. Teal Pumpkin Project from the Food Allergy Research & Education has gone nationwide. Paint a teal pumpkin or put out a teal pumpkin sign and people will know that your house has non-food treats, too. Then add your house to the map of homes that are offering non-free treats. One of the homes on the site this year is Fairview Bed and Breakfast, which is a gluten-free bed-and-breakfast in Travis Heights. Owners Vivian and Jimi Ballard will hand out small toys as well as gluten-free candy.
Barnes recommends offering items such as
You can also put a sticker on your child that says “non-food items only.” That way you don’t have to explain at every door why you can’t take the candy.
If you do need to take the candy and don’t want to be impolite, your child could still benefit from the candy. Many orthodontists participates in the Halloween Candy Buy Back program. I searched my ZIP code and found multiple locations within 10 miles of my house. You also can ask your own orthodontist if his or her office is participating.