How to plan your estate when you have a child with special needs

Estate planning. It’s not something parents really want to do. You have to face your own mortality, and the fear that you might not live long enough for your children to become adults.

For parents who have kids with special needs, they know their kids might outlive them and need a support system to handle everything from finances to personal care.

Last summer Down Syndrome Association of Central Texas hosted a seminar for its parents with Justin Blumoff, a trust and estate attorney from Sharpe & Associates. Estate planning for families with someone with special needs does have some of the same elements as families with neurotypical children. You still need to think about these things:

  • A will
  • A living trust
  • Medical power of attorney
  • Financial power of attorney
  • Advance healthcare directive
  • HIPAA authorization

“One of the misconceptions is that (having a kid with special needs) really changes everything,” Blumoff says. “”It really doesn’t.”

One thing is different: Parents of children with special needs do have to take care that their estate plan doesn’t disqualify their child from receiving government assistance like Social Security disability, Blumoff says.

Blumoff helps families set up a special needs trust that includes language that will allow the children still to get assistance.

“If you use a traditional plan, you may disqualify them,” he says. Housing is a particular concern as far as who inherits a house and what money can go toward the person’s housing.

Jon and Connolly Lees and their children Breda, 4, and Henry, 6, now have an estate plan in place. Breda has Down syndrome. Lees family

When Blumoff meets with families, he asks them to think about their assets as well as what the needs will be now and in the future. Sometimes that means having a person who is the guardian and a different person that has the fiduciary responsibilities. Blumoff does recommend contacting whomever you choose to make sure they are willing to take on these responsibilities. Some families even write a letter to the people they name in the trust to pass on more information. Often that letter is “This is how we live our life and these are the people we want them to have contact with,” he says. “Some people go through it and are very focused on investments; some people do pages and pages of pouring out their love.”

Often, when estate planning with families Blumoff will have an initial 10 minute phone call.

He’ll ask families to consider who would be the first person they would call other than a spouse for medical decisions, who would be the first person other than a spouse for financial decisions? Who would they generally want to take care of their children?

After families make those decisions, they’ll have a 30 minute to an hour meeting to go through it with Blumoff, then schedule a time to come back and sign the documents. Families can expect to spend $2,000 to $4,000 based on the complexity, Blumoff says.

“It seems a lot more overwhelming than in reality,” he says. Often people will tell him, they have been meaning to do it for 10 years, but then they thank him with how easy it was.

“Planning for special needs families is not a complete wipe of the board and do something different, it’s include a few extra provisions.” It took Blumoff two years to get to doing his own estate planning.

Once you’ve gone through the process, you should revisit it every three to five years, Blumoff says. He keeps a watch on legislation and how it might change the wording that might need to be included the documents.

Jon Lees and his wife Connolly did their planning for their children Henry, 6, who is neurotypical, and Breda, 4, who has Down syndrome. They had to consider what would happen now if something were to happen to them as well as in the future and what role Henry might play eventually in Breda’s life. They set it up the document with provisions in place to grow with the children as they age, but Lees also learned a lot about revisiting it as the children age and Henry is given more control.

“We want to do everything we can that when we’re gone, she’s going to have a team of family members to care for her and help make decisions alongside of her, but also centered around her needs and happiness,” Jon Lees says. “We’re thinking of that for our typically developing son as well,” he says.

Special Needs Family Jamboree

Casey’s Circle is planning this free event with more than 20 organizations coming to inform families about available resources.

10 a.m. to noon Saturday

Play for All Abilities Park, 151 N. A.W. Grimes Blvd., Round Rock.

Register at to attend

More kids are taking vitamins than a decade ago, but do they do any good?

Every morning you make your kids breakfast and that breakfast includes a multivitamin in chewable or gummy form. You think, “Hey, even if they aren’t eating as many of the fruits and vegetables the food pyramid might recommend, at least this is something healthy we’re doing.” Right?

Well, it turns out that you wouldn’t be alone. According to a study published in the June issue of the Journal of American Medical Association Pediatrics,  a third of U.S. children and adolescents would say they “had taken any vitamins, minerals, herbals or other dietary supplements in the last 30 days.” And the use of alternative or herbal supplements has almost doubled from 3.7 percent to 6. 3 percent from 2003-2004 to 2013-2014.

As Cookie Monster is learning, real fruit and vegetables are good for you. Sesame Workshop,Richard Termine

It had us wondering, do kids even need a multivitamin or other dietary supplement on a regular basis?

The answer for most kids is no, says Dr. Steven Abrams, professor of pediatrics at Dell Medical School at the University of Texas. Abrams was the lead author of the recommendations made by the American Academy of Pediatrics last year that told parents to avoid giving children younger than 1 fruit juice.

“Most kids, if they take a supplement like a standard daily vitamin, it won’t cause any harm,” Abrams says. “For the most part, it probably won’t do any good, either.”

Dr. Steve Abrams is the chair of pediatrics at Dell Medical School at UT Austin.

Rather than giving them vitamins or supplements like Pediasure, he would rather parents concentrate on finding healthy foods their children like and encouraging them to try new things, but not force them. Remember that what they get in the food they eat is more than just the vitamins. In fruit it would be antioxidants and fiber as well.

Many parents will ask about their picky eaters, but he says, kids are probably getting more variety in their diet than we recognize. “If your child is growing normally, there’s a really good chance he’s eating better than you think.”

If not, talk to your pediatrician and do some tests to see if there is a vitamin deficiency, chronic illness or other circumstance that would make your kid an exception to the general rule that vitamin supplements aren’t necessary. For example, Abrams says, teenage girls sometimes might need an iron supplement if they become anemic.

Babies who are exclusively breastfed also might need Vitamin D, because breast milk doesn’t have any Vitamin D in it, but formula does, Abrams says. In Texas, often babies can get Vitamin D through a bit of sun exposure. Moms also can put Vitamin D drops either in a bottle of breast milk or on her nipple when nursing. Breastfed babies also need iron when they turn 4 months old, he says, until they are getting it through their diet after meat or fortified cereal is introduced.

RELATED: When to introduce solid foods to babies

Taking vitamin supplements usually isn’t dangerous unless kids are treating them like candy or are using them instead of medication. Abrams gives examples like using Omega 3 instead of medication to control attention-deficient hyperactivity disorder, or using Vitamin D to try to prevent the flu instead of a flu shot.

Also, supplements with a high concentration of caffeine could be dangerous as well.

What about melatonin as a sleep aid? A new study released by the American Academy of Pediatrics Thursday indicated that melatonin could help children with developmental delays or autism sleep better.  That might be true for those kids, Abrams says, but most kids will do well without melatonin if parents concentrate on improving sleep hygiene by doing things like shutting of the screens before bed and reading a book instead.

RELATED: How much kids sleep matters in obesity prevention



Traveling to Houston this summer? See how Space Center Houston has become a certified autism center

Space Center Houston, where you can learn all about the latest in space exploration by NASA has been named a Certified Autism Center by the International Board of Credentialing and Continuing Education Standards.

What does that mean?

The Resource Prospector 2015 (RP15) Rover Prototype is shown at the Johnson Space Center in Houston.  Brett Coomer /Houston Chronicle

It means that the staff has been trained on accessibility and inclusion strategies for people with autism. It also means that the center has made improvements to the center to make it more accommodating for people with autism and other sensory and cognitive differences.

“Science, technology, engineering and mathematics education is for everyone,” said William T. Harris, the center’s president and CEO, in a press release. “This certification highlights our dedication to be inclusive and to inspire the next generation of problem solvers.”

Workshops taught staff, especially those in guest services, what to do when a child does things like run when he gets overwhelmed.

“We train our team about awareness and sensitivity, best practices for instruction and interactions,” said Stephanie McMahon in a press release. She is a special education certified teacher and mother to an autistic child, who is now the senior lead instructor in its Education Department, and the inclusion and accessibility coordinator.

McMahon has helped develop a “Stellar Explorer Guide,” that individuals and school groups can use to prepare guests with autism for an upcoming visit and vocabulary cards for non- or low-verbal guests that can help with transitions and timelines.

The Center also has Sensory Friendly Evenings for which families can sign up.

Get the complete accessibility guide here.

Find out more about Space Center Houston, at

RELATED: New guides to eating out at restaurants for children with autism

RELATED: Wings for All program prepare kid with autism for airline travel

RELATED:  Tips on how to go on vacation for families with autism or serious illnesses

RELATED: Mom shares less-than-pretty truth about raising a son with autism

RELATED: Why do so many kids with autism not get diagnosed by age 2?

RELATED: New numbers show increase in autism rates, but there’s more to that

Austin girl playing Carnegie Hall Friday with students from Orpheus Academy of Music seven years after stroke

How do you get to Carnegie Hall?

Well, for the more than 40 kids from Austin, it’s taking lessons from Orpheus Academy of Music and lining up to get one of the slots in Orpheus’ first Carnegie Hall concert. The classical music school is celebrating its 15th anniversary in a big way with this concert on Friday at the famed New York City venue.

Klondike Steadman director of musical arts at Orpheus, said the music school allowed students to secure their spot by registering in person at 8 a.m. on a Saturday months ago. People started lining up, sitting in their lawn chairs outside the school, at 10 p.m. the night before.

“What we go for is how dedicated will you be,” Steadman says, of how students got picked for the concert.

The performance will be extra special for 12-year-old Casey Irwin and her mom Julie. On Friday, Casey will be singing “My Funny Valentine.” She likes the song for its humor and because it fits with her voice and her range.

Casey Irwin, 12, plays piano with one hand. She’s used music to recover from a stroke when she was five. RICARDO B. BRAZZIELL / AMERICAN-STATESMAN

Casey began voice lessons when she was 7 as a way to help her talk again after she had a stroke when she was 5.

“She couldn’t talk at all,” Julie Irwin says of her daughter when she first had the stroke. “She couldn’t read, she couldn’t make a word.”

Yet, at Casey’s first singing lesson, the teacher told her to take a pencil, read the lyrics and make notes in the sheet music.

[cmg_anvato video=”4427030″ autoplay=”true”]

Irwin says she didn’t think Casey could do that and wanted to jump in and try to explain the limitations Casey faced, but she didn’t. “The teacher was nonplussed by it,” Julie Irwin says of the stroke.

Irwin walked away and let the lesson happen, and Casey, who has lasting damage to her right hand from the stroke and had to learn how to write with her left, sat down and made notes on the sheet music.

“She was so motivated to do it,” Irwin says.

This picture of Casey Irwin was taken just before she had her stroke at age 5.

Casey’s musical ability was part of her even before the stroke, her mom says. As a preschooler, she had a male music teacher and she would sing exactly an octave up from what he was singing. That’s rare, Steadman says.

Everyone had told Irwin that some kind of music would be helpful for Casey to regain language. Music and singing use a different part of Casey’s brain, and singing could form the bridge between.

“Music really helped me,” Casey says. She was motivated to learn how to read by reading the lyrics.

“It helped her healing,” Julie Irwin says.

The stroke happend July 11, 2011, the summer after Casey’s kindergarten year. She was in the pool at Reed Neighborhood Park.

Luckily, Julie Irwin was right there when Casey came up out of the water. Casey couldn’t walk or talk. “Her whole face was drooping,” Julie Irwin says. Casey started crying, but she couldn’t make a sound.

“I knew it was extremely serious,” Irwin says.

Irwin was screaming for people around her to call 911.

Casey says the stroke didn’t really hurt, but she remembers thinking, “I’m going to die,” she says. “It was very scary, but then my mom was right there, and I knew I was going to be OK.”

They went by ambulance to Dell Children’s Medical Center of Central Texas and Casey stopped breathing along the way. Doctors got Casey stabilized and the recovery began.

Casey Irwin and her mom Julie can just now talk about the stroke that happend to Casey seven years ago. RICARDO B. BRAZZIELL / AMERICAN-STATESMAN

Casey couldn’t make any sounds at first, but then a week later, she made a grunt while playing with a balloon with her grandparents. Then with more therapy and time, and she learned how to point with her left hand to get what she wanted. Then in another month, she could say 10 to 15 words.

Julie Irwin likened it to her daughter suddenly being an infant again and learning to talk: first grunts and babble, then pointing, then a few words. “She had a fairly strong accent,” Irwin says, like she was drunk, for a very long time.

Casey was in therapy constantly, first at Dell Children’s, then at a specialized rehab center in Dallas, then outpatient therapy back home.

She relearned how to walk, first with six people helping her, then on her own with a specialized electronic boot to stimulate the nerves.

Her speech began to come along, but she would mix up words or be searching for a word, which still sometimes happens. She’ll be talking about Niagara Falls when she meant Neanderthals.

And she still has weakness in her right hand, which she holds in a fist close to her chest.

“Doctors said it was going to get better,” Casey says of her hand. “They don’t really know,” Julie Irwin says.

In addition to taking voice lessons and music theory at Orpheus, Casey has now started taking piano. Her teacher gives her music that is written for or arranged for people with the use of only one hand. Again, like that first voice lesson, Julie Irwin walked out of the room and let the lesson happen. Casey was able to play with her teacher. “It’s helpful to have a place that didn’t make (the effects of her stroke) a thing,” Julie Irwin says. “They aimed a little higher,” she says.

Steadman says he has learned a lot from his wife, Wendy, who is also a music teacher, and got her start teaching adult with disabilities. Now 50 percent of his wife’s students would be considered on the autism spectrum or having another disability. “Everybody is special needs,” Steadman says. “Every single student has areas where they excel and areas where they need to learn,” he says.

Casey is now playing Bach on the piano, about a year after starting lessons, and it has helped strengthen her right hand.

“It shows what I can do in a different way,” she says. “I tried it out and I really liked it,” she says of piano. Julie Irwin says Casey already plays better with one hand than she did with two hands when she took lessons as a child.

Casey is a bit nervous to play at Carnegie Hall. “Am I sure I want to do this?” she’s been asking herself.

Performing regularly is part of Orpheus’ curriculum. Students play for one another regularly as part of music theory class and in regular recitals. It’s all about confronting stage fright, and as Steadman says, being a part of something bigger than yourself. “Together we inspire,” he says the school’s philosophy is. “Casey’s been such a big part of it.”

New guides help families with autism plan ahead for eating out at Flower Child restaurants

We’ve done stories about sensory friendly offerings, from the Wings for All program to help kids prepare for airline travel by practicing boarding a flight, to including sensory friendly hours at the Thinkery and movies at the Alamo Drafthouse in our family calendars, to giving tips on how to go on vacation for families with autism or serious illnesses. 

Now you can take a trip to a restaurant virtually in preparation for physically going to that restaurant. Pal, a company that has the slogan “Everyone gets to go,” offers virtual tours, digital guides and digital tours of places families might want to go. Most of its places have been in Arizona, but now it has these tours and guides for Flower Child, a restaurant that focuses on local food. Flower Child has two Austin restaurants: one downtown at 500 W. Second St. No. 133, and the other at the Domain, 11721 Rock Rose Ave.

Flower Child downtown focuses on healthy meals like salads and grain bowls. (Contributed by Flower Child)

On the video tour, you get to see a family who has a child who appears to be on the autism spectrum enter the restaurant, order their food, pick up their drinks and silverware, wait for the food, eat their food, and take to-go boxes home. You see the scenes in the restaurant as well as hear the noise of the restaurant, which has an open kitchen.

The insider tips rate the crowd level, the noise level, the amount of walking, and the average length of stay. The digital tools give a step-by-step guide to your experience in the restaurant.

Check it out and encourage your favorite restaurant to do the same. 


Why are many kids not getting diagnosed with autism before age 2? New study has some answers

Monday, the American Academy of Pediatrics released a study done in Norway that might shed some light into why many kids are given a false-negative diagnosis for autism at 18 months.

Dylan Flint, 7, and Liesa Randel get their boarding passes for the Wings for All flight for children with autism to practice going through security and boarding a plane. Nicole Villalpando/American-Statesman 2016. 

The researchers looked at 68,000 kids whose parents had answered the screening questionnaire that is the first step in the diagnosis of autism spectrum disorder and then been told that they were not on the spectrum.

RELATED: New numbers show increase in autism rates, but there’s more to that

At 18 months, the kids in the false-negative group had delays in social, communication and motor skills compared with the kids who were truly negative for autism. Boys in the false-negative group were often labeled more “shy,” but girls were not labeled as shy as their true-negative counterparts.

What the study found was that often parents didn’t report delays or really understand the characteristics they saw as compared with what would be considered neurotypical. Gender also mattered how parents saw their children and how they answer questions on this test.

RELATED: Mom shares less-than-pretty truth about raising a son with autism

Dell Children’s to open new mental health unit on Monday as it expands levels of care

On Monday, the first patients will be admitted into the new Grace Grego Maxwell Mental Health Unit at Dell Children’s Medical Center of Central Texas.

The center, which was made possible by a $3 million donation and matching grant from Nyle and Nancy Maxwell and their family in January 2017, is named after Nyle Maxell’s mother, a longtime volunteer at the hospital.

“As with most families who are challenged with raising children in this complicated environment we have today, mental health is a challenge,” said Maxwell, former Round Rock Mayor and owner of the Nyle Maxwell Family of Dealerships, when his family announced their donation. “My family is not immune to this.”

Dr. Sonia Krishna, a child and adolscent psychiatrist, shows an examination room at the Grace Grego Maxwell Mental Health Unit at the Dell Children’ss Medical Center of Central Texas. JAY JANNER / AMERICAN-STATESMAN

The opening of the 24-bed mental health hospital unit means that children with mental health diseases can be treated at the same facility as children with physical diseases.

“The biggest thing is we are really destigmatizing mental illness,” says Dr. Sonia Krishna, a child and adolescent psychiatrist at Dell Children’s. “It’s on the same plane as children getting treatment for physical illness. It’s another pediatric problem.”

Previously, children needing hospitalization for mental health diseases would come to the emergency room at Dell Children’s and then be transferred to the pediatric and adolescent unit at Seton Shoal Creek Hospital or another hospital. That unit at Shoal Creek accepted its last pediatric or adolescent patient on Thursday morning. Those remaining in that hospital over the weekend will be moved to the new unit at Dell Children’s on Monday. In the meantime, patients are being referred to other mental health hospitals throughout the area.

Seton Shoal Creek will become an adult-only facility on Monday. Seton has not determined what the now-empty unit at Shoal Creek will become. The long-range plan is for a new adult hospital.

The Grace Grego Maxwell Mental Health Unit at the Dell Children’s Medical Center of Central Texas will open on Monday. JAY JANNER / AMERICAN-STATESMAN

The new unit at Dell Children’s was both an addition and a remodel of existing space. The unit has a separate entrance and waiting room that will be staffed 24-hours a day. Physicians can now directly admit patients to the unit rather than patients having to go through the emergency room.

“The emergency room is not necessarily the best environment for kids in crisis,” says Angela Nguyen, the clinical manager of behavioral health and therapeutic services at Dell Children’s. It can be a scary place, she says, and it also can expose them needlessly to germs.

Patients also previously had to transition to another space for care, which was an added expense to families as well as added time before children got the right type of care they needed.

Now, families will be able to be go to that separate entrance, be assessed in one of four consultation rooms and be either admitted for inpatient care or accepted into the new intensive outpatient program or partial hospitalization program that will be on-site or accepted into a less-intensive outpatient program such as the Texas Child Study Center, which is connected to Seton and the University of Texas.

The Texas Child Study Center is expected to move to a location either on the hospital property or nearby by the end of the year, Nguyen says. Other Seton-affliated mental health physicians and psychologists will continue to deliver outpatient care at centers throughout the community, so that families don’t have to necessarily drive to Dell Children’s for that care.

In the new mental health unit, the assessment and referral should happen within two hours of arriving at the hospital, Nguyen says. Instead of just being given a set of numbers to call if a child doesn’t need to be admitted, families will be given “a here’s where you’re going to be going,” Nguyen says.

Patients who need physical medical attention because of self-harm or who are in imminent physical danger will be admitted to the hospital until that need has subsided.

If children do need to be admitted to the mental health unit for what is typically a four- to five-day stay, they will receive a continuity of care as they step down levels of care. They will see the same group of physicians who are sharing the same records, rather than having to go somewhere else.

“We’re focusing on integrated care,” Nguyen says. “The right place at the right time.”

The unit is not expected to reach capacity during the summer, which is the slowest time of the year for mental health intake cases as well as hospital intake cases in general, Krishna says. Fall and spring tend to be the busiest times of the year for cases, she says, and when it does reach capacity, doctors will do what they currently do and find patients placement at other area hospitals, or if they know a bed is about to become available, have them stay in another part of the hospital temporarily.

The inpatient unit will be divided by age — 6-12 and 13-17. It was built with the ability to separate areas and change how many of the rooms are for each age group based on need. The unit has spaces for group therapy as well as quiet and not-so-quiet activities. All the rooms have psych-safe furniture that is bolted down, but the unit was designed to be light and airy and not feel like a bad place to be, Nguyen says.

Rooster Teeth donated the unit’s healing garden, which will have a shaded basketball court, space for noisy activities and more quieter activities as well as the potential for raised gardens for kids to plant.

The intensive outpatient and partial hospitalization side has room for two to four groups of eight to 10 kids in each group at one time.

The new center will allow Dell Children’s to also expand care in specialized areas such as substance abuse treatment and eating disorders. The needs and where to put the focus is still being assessed, Krishna says.

“It’s going to be a really great experience,” Nguyen says. “We’re all going to be here under one roof. Everyone is excited to make sure kids have a great experience.”

Use an EpiPen? Drug shortage might have you scrambling

Last week, the Food and Drug Administration reported a shortage of Epinephrine Injection, Auto-Injector from Impax Laboratories because of a manufacturing delay. 

What does that mean to you? It means that your pharmacy might be having trouble getting you an EpiPen, EpiPen Jr. and generic versions of those and of Adrenaclick.

Two EpiPen Jr autoinjectors are seen in 2016. Epinephrine autoinjectors, used to treat severe allergic reactions, are in short supply and were added to the Food and Drug Administration’s drug shortage list. (Chris Walker / Chicago Tribune/TNS)

What you can use as a substitute is Auvi-Q auto-injectors. Your doctor also can call your pharmacy and see which ones it has on hand.

The EpiPen manufacture Pfizer had this to say on the news of the shortage: “Pfizer takes very seriously the importance of EpiPen to everyone who needs it, and we are working tirelessly to increase production as rapidly as possible. We are currently shipping
EpiPen, with production increasing over the last few months and anticipated to continue to increase and stabilize over the coming months.”

Austin family puts Smartwatch Embrace that detects epilepsy seizures to the test

Our smartwatches are fun. Our smartwatches are cool. Our smartwatches could save a life.

Yes. Now a special kind of smartwatch can send a text message, place a phone call, as well as make a record of every time someone with epilepsy has a seizure. Earlier this year, the Food and Drug Administration approved Embrace, a smartwatch that does just that.

Austinite Elaina Cione, 15, has been wearing an Embrace since February. She was first diagnosed with epilepsy when she was 8 and began having seizures. With medication she went about two years without a detectable seizure, but that ended about a year ago.

For her parents Todd and Elizabeth Cione, the fear is that Elaina will have a seizure in her sleep and her airway will be blocked by a pillow or the mattress, or that she will have a seizure and hit her head without anyone knowing it. One time they went upstairs, woke her up for the day, gave her medicine, went back downstairs and within minutes they heard her collapse on the shower floor. Epileptics also die of something called sudden unexpected death in epilepsy, which is similar to sudden infant death syndrome. They are just found dead in bed.

There’s no warning with a seizure and Elaina doesn’t know what’s going on. She has no memory of them and loses track of time. “It’s a terrible experience to see a loved one have a seizure,” Todd Cione says.

Austinite Elaina Cione, 15, has been wearing an Embrace smartwatch since February. It alerts her parents when she’s having an epileptic seizure. Family photo

Since Elaina began wearing the Embrace, some of that fear has subsided. Easter weekend, Elaina was in another room of their house when the Todd Cione’s phone rang and alerted him that she was having a seizure. She ended up having nine more in a 12-hour period. “Had I not been alerted, with five of those seizures in night hours, I may have never known about it,” Todd Cione says.

On the first seizure, he found her, in bed with the covers pulled up around her. “It was a little alarming,” he says, because he knows she can’t do anything to push away those covers from her face.

The Embrace detects rhythmic arm movement that signifies the motion of a seizure. It also measures body temperature. It then uses Bluetooth to send a signal to an app on Elaina’s phone. Her phone then calls her parents and texts them this message, “Elaina needs your help,” signifying that the Embrace detects a seizure. The Ciones have it set so that those messages will break through the silent or sleep modes on their phones. It also tells them where she is, which will be helpful when she leaves home for college or if she’s doing an after-school activity.

Another app logs information about the seizure such as length of time and when it started. That will provide valuable information for how well or not well medications are controlling her seizures.

There has been at least one false alarm. One time, when they were all driving in the car, it went off, but she was fine. “At that point, I thought it might be a wasted effort,” Todd Cione says. And then the night of the nine seizures happened.

“Within a couple of weeks, it’s proven invaluable to us,” Todd Cione says.

They see it as an extra monitor, like an extra set of eyes, especially when she’s asleep or taking a shower. Each day after school, Elaina charges the Embrace, which has a battery that lasts about 30 hours each charge.

Austinite Elaina Cione, 15, has been wearing an Embrace smartwatch since February. It alerts her parents when she’s having an epileptic seizure. Family photo

“I like wearing it a lot,” Elaina says. Her friends just think she has a cool watch until she tells them what it does.

“It’s piece of mind for parents and family,” Elizabeth Cione says. “For giving her more independence, it’s hugely helpful.”

When Elaina is wearing the Embrace, “I won’t have to be on edge,” Elizabeth Cione says.

The Embrace cost the Ciones $249, plus there’s a $20 a month monitoring fee. They haven’t tried to go through their insurance yet, but because it is FDA-approved, that is a possibility.

Embrace isn’t for every person with epilepsy, though. It probably won’t work for people who have non-convulsive seizures, says Dr. Karen Keough, pediatric neurologist at Child Neurology Consultants of Austin. For those patients, other monitors are in the works, she says.

One thing that can be great about the Embrace or another product like it is if it can accurately log the number of seizures and their length, Keough says. Patients and their parents aren’t always the best about writing down every seizure.

Seizures in the moment also can feel like forever, and sometimes families don’t give accurate information about the length of the seizures. To have actual data about when the seizure started and when it stopped can be helpful to determine how well medications are working. It also can help parents know if they need to give the rescue medication when the seizure has gone on for more than five minutes. Lengthy seizures have been linked to brain damage.

“The ideal goal of treatment is that they don’t have any seizures at all.” Keough says. “The majority of patients do get that with treatment.”

20 favorite TV moms and what they’ve taught us

Who among us hasn’t wished for a different mother, like the ones you see on TV? And for moms, who among you haven’t wished you could be more like those moms on TV? Steady and kind, funny and smart, always with the right answer to any problem.

For Mother’s Day, we give you 20 of our favorite TV moms. None of them are perfect, all of them have some definite flaws, but they are endearing, people we can relate to and they make us think. Deep down, they are just like real moms — but with better hair and wardrobe.

Carol Brady’s love was at the center of “The Brady Bunch.” FILE

Carol Brady

“The Brandy Bunch”

Carol Brady taught us that there didn’t need to be a difference between the love she had for the children she birthed and the love she had for the children who became hers through marriage. She’s the ultimate step-mom, and she quietly fought the notion of what boys and girls can do in her own house. “Camping is for boys and girls,” she told the kids.

June Cleaver loved her boys in “Leave It to Beaver.” File

June Cleaver

“Leave It to Beaver”

June Cleaver came to represent the bygone era of moms of the 1950s. Moms that always had a piping hot dinner on the table, while wearing a dress, heels and pearls. Yet, June Cleaver could be no-nonsense, and you definitely knew she cared about both of her boys and even neighbor Eddie Haskell. She was forever saying, “Ward, I’m very worried about the Beaver.”

Jackie and sister Roseanne might be different, but you know they love one another in “Roseanne.” ABC

Roseanne Conner


Roseanne Conner said the things all moms think with plenty of sarcasm thrown at you. Things like, “Excuse the mess, but we live here.” Roseanne and husband, Dan, don’t put on any airs. They are real Americans and they don’t care if you love them or loathe them. The great thing about Roseanne Conner is we’ve gotten to grow up with her family and see them 30 years later, and guess what? They are exactly the same.

Linda keeps the family going while Bob makes the family business happen in “Bob’s Burgers.” FOX

Linda Belcher

“Bob’s Burgers”

Linda Belcher loves her babies intensely. She’s fun, she’s a bit wacky. You just have to love her. And she’s very real, even if she’s a cartoon. She has real quips on parenting, like: “Raising you kids is a two parent, two-bottles-of-wine-a-night kind of job.”

Dre and Rainbow Johnson have been through a lot as a couple in “Black-ish.” ABC

Rainbow Johnson


We’ve gotten to watch Rainbow go through many things including most recently postpartum depression and conflict in marriage. She is the rock to the gregarious Dre, plus we love how she handles the in-laws and the teenagers, factions that could make any mom lose it. This family feels real because of her. As her husband announces that he’s figured out a way to save Halloween, she says, “Oh that’s great. I found a way to save a guy that was at the bottom of a pool for twenty minutes, but you go.”

“Speechless” is all about family and overcoming challenges. The parents just come up with different approaches. ABC

Maya DiMeo


Raising a child with differences makes you resilient. Never has there been an example of this like Maya DiMeo. She’ll pick up the whole family and move if she doesn’t get the services she wants for her kids. As she tells her son Ray, ““I’m not going to apologize for taking care of your brother. He got the right mum.”

Clair Huxtable always wore big hair, big earrings and big shoulder pads, but she also wore a strength that moved mountains. FILE

Clair Huxtable

“The Cosby Show”

The creator aside, this show taught us that women can be both a professional and a mom. They could be smart and sexy. They could be strong and vulnerable. They also could stand up to their husbands in a way that was not passive or offensive. “No, Cliff. You don’t understand, Honey. You did not have that child. I had that child. I was the one who was on that table screaming, ‘Take it out!’”

Mrs. Garrett was at the heart of “The Facts of Life.” FILE

Edna Garrett

“The Facts of Life”

Yes, Mrs. Garrett isn’t technically a mom to the girls under her care, but she definitely mothered those girls. She played the straight woman to their zany, and she always saw them for who they are, counseled them on all their troubles, and delivered consequences with a firm, loving stance. She always knew the right thing to say, “Oh honey, your decision to stay a kid is the most adult thing you’ve ever done.”

Marie Barone wouldn’t get out of son Raymond’s life or trying to control husband, Frank. CBS

Marie Barone

“Everybody Loves Raymond”

Marie Barone firmly believes that a mother’s work is never done, which is why she continues to mother both her adult sons. She mothers with guilt. She mothers with food, which is how she shows love. She is always the straight woman to husband Frank, who always got the best lines. Instead, with Marie, you knew exactly where she stood because she always let you know. As she often says, “I don’t like that.”

Ma made everything OK in “Little House on the Prairie.” FILE

Caroline Ingalls

“Little House on the Prairie”

Life on the American frontier was hard, yet Ma always kept her children fed and clothed and imparted wisdom that worked for any age, like this gem: “When you love somebody, it’s worth putting your pride behind you.”

Marion Cunningham “adopted” more than a few wayward strays in “Happy Days.” ABC

Marion Cunningham

“Happy Days”

Marion Cunningham loved her children and their friends, and she had a special place in her heart for the Fonz. “I hope you weren’t offended when I got a little peeved at you the other day … You did a wonderful job, Arthur. Shall we make up?”

“The Simpsons” never seem to age, but Marge becomes more and more central to the way that family works. Fox

Marge Simpson

“The Simpson”

Without Marge this family (and this show) wouldn’t work. While we often forget about her as the rest of the family is going through one round of high-jinks after another, she often knows the right thing to say to bring her children back to reality. Sometimes, it’s just a groan or a look, or a sigh that follows, “Oh, Homie.”

“The Addams Family” has had different incarnations like this movie version. Annie Lebovitz

Morticia Addams

“The Addams Family”

Morticia Addams celebrates her family and their uniqueness in fierce ways. She shows love and cleverness and feminism in the 1960s. “I’m just like any modern woman trying to have it all. Loving husband, a family. It’s just… I wish I had more time to seek out the dark forces and join their hellish crusade.”

The Keaton family in “Family Ties” learned how to love despite different political views. NBC

Elyse Keaton

“Family Ties”

Elyse Keaton had four very different kids, plus a Skippy. Yet, she loved every one of them, even Alex who was a Republican to her former hippie self, and Mallory, who was more interested in clothes and boys than school, something hard to understands as a woman with a career in architecture. Yet, she met every kid where they were and tried to help them be better. As she tells Alex, “You’re pushing yourself too hard.”

Lucy and Ethel were a package deal in “I Love Lucy.” FILE

Lucy Ricardo

“I Love Lucy”

Nothing ever went right for Lucy. Somehow she always messed something up, which made her very human. She taught us the importance of moms having friends. She and Ethel were thick as thieves, as with this exchange:

Lucy: I’ll get even with him!

Ethel: What are you gonna do?

Lucy: I’ll leave him! No. That’s probably what he wants.

Ethel: Yeah, stay married with him. That’ll teach him!

Coolest mom ever, Shirley Partridge let her kids form a band in “The Partridge Family.” FILE

Shirley Partridge

“The Partridge Family”

Shirley Partridge taught us that moms can rock and they can go on the road with their kids and form a rock band! She was the ultimate stage mom, but not in a creepy way, and with her magical tambourine, she allowed her kids to follow their dreams. She also gave us real insight in the struggle of being a single mom, “Let me explain something to you. I’m your mother, and in that way I’ll always belong to all of you. But I’m also a woman. And even with five children whom I love very much, and who I know love me, there are times when I still feel lonely.”

Michonne from “The Walking Dead” provides a lesson in love after loss. Gene Page/AMC


“The Walking Dead”

Michonne as the katana-wielding superheroine of the zombie apocalypse lost her own son to the apocalypse, but she took on the role of mother to Rick Grimes’ children. She’s become the voice of reason, after starting out with so much anger about her own child’s death. As she says to Grimes’ son Carl, “I can’t stop you, but you can’t stop me from helping you.” She’s the epitome of a strong woman making the best of a difficult situation and doing it with love.

Lois seems to always be yelling at someone in “Malcolm in the Middle.” Deborah Feingold/FOX


“Malcolm in the Middle”

Lois is an every mom. She’s working a bad job, trying to raise four boys, one of whom is already a delinquent and one of whom is a genius she doesn’t know what to do with. Plus she’s got a husband with some pretty wackadoodle ideas. She always comes back with a good quip: “Once upon a time, there was a little boy that made his mom so crazy she decided to sell him to a circus.”

Tami Taylor might think her husband’s approach needs softening and she’ll let him know in “Friday Night Lights.” NBC

Tami Taylor

“Friday Night Lights”

Tami Taylor as the school counselor/principal/football coach’s wife mothered a whole team, really a whole town. There’s a sweetness to her and a toughness. She’s always the voice of reason and compassion. As she says, “I believe in you with every cell of my being.”

Daenerys Targaryen is the Mother of Dragons in “Game of Thrones.” If you can mother dragons, you can do anything, right? HBO

Daenerys Targaryen

“Game of Thrones”

Motherhood can be elusive. Daenerys loses her unborn baby in the first season of “Game of Thrones,” yet she grows an empire and three dragons. She is the mother of dragons and so much more. As she says, “No one will take my dragons.” And yet, we now know she is vulnerable.