From the Homefront: Coast Guard families share their journeys on the autism spectrum
Posted by LT Sarah Janaro, Thursday, March 30, 2017
Twice a month, Coast Guard All Hands will feature “From the Homefront,” a column for Coast Guard spouses by Coast Guard spouse Shelley Kimball. Shelley has been married to Capt. Joe Kimball, chief of the office of aviation forces at Coast Guard headquarters, for 16 years. She currently serves on the board of directors for the Military Family Advisory Network.
Written by Shelley Kimball
There is a saying that if you have met one person with autism, then you have met one person with autism.
There are many types of autism spectrum disorder, which can bring challenges in social skills, behaviors, and speech and nonverbal communication. Children on the autism spectrum are unique, and the way autism presents itself is unpredictable.
“Not everyone looks the same, acts the same, has the same challenges,” said Janet McDowell, a Coast Guard spouse whose 11-year-old son is on the autism spectrum. “Some kids who are more attention seekers, some attention avoiders. Every child with autism that you meet is probably different form every other child with autism you have met.”
In recognition of World Autism Awareness Day (April 2), five families are sharing their stories of Coast Guard life with a loved one on the autism spectrum.
Remember the spectrum
McDowell’s son was diagnosed with autism just before beginning the second grade. Their pediatrician was the one who suggested testing. She and her husband, Petty Officer First Class Jacob McDowell, noticed that their son spoke late and “did his own thing, marched to the beat of his own drum,” she said. Testing showed that their son is high functioning but on the spectrum.
“We figured early on that he was quirky, unique, but we didn’t realize it fell under an umbrella or anything,” she said.
While some kids with autism are unable to bond with parents, McDowell said that her son has been able to develop a strong relationship with her.
“For us, I feel very fortunate that he was able to do that with me,” she said. “I’m his person.”
In the beginning, her son had assistance with speech and language, occupational therapy, and social skills. Then they moved, and there were fewer resources available. And he was doing well, so they did not feel like they needed to continue, she said.
However, because he is turning 12, they may look into some additional help soon.
“I suspect we will need social skills training to help him through the teen years,” she said.
McDowell also homeschools her son, “so that eliminated the challenges that come with dealing with a bunch of other people and a bunch of other kids every day,” she said.
One of the challenges they face is that there are fewer services available for high-functioning kids, she said. For example, she looks for sports that focus on teamwork and skills, rather than competition. He doesn’t fit into special needs groups, but he also needs some assistance.
“Finding that grey area can be difficult,” McDowell said. “You tend to see neurotypical kids or people who have bigger challenges than he does.”
The best solutions come from sharing knowledge and experience, she said. She encourages other families to find ways to connect.
“It’s not something you have to hide,” McDowell said. “It’s not something you have to do alone.”
Persevering through the moves
Master Chief Travis Ridgeway, the command master chief for the Coast Guard Navigation Center, said that finding the right resources has been a struggle, but also the key to getting his son the best treatment as he has been transferred to new units.
The Ridgeways’ story with autism began in 2003 when Zachary was born. During those early years, Travis was underway for weeks or months at a time on the Coast Guard Cutter Diligence. Zachary’s grandparents noticed that he would be engrossed with the ceiling fan watching it spin or he would not respond when anyone called his name.
By the time he was 18 months old, Zachary’s pediatrician started to notice some developmental delays, so they started him in some speech and occupational therapies. In the spring of 2006, as the family was preparing to transfer to Jacksonville, Florida, assessments showed that Zachary was on the autism spectrum. The next year, Zachary officially received his diagnosis.
Zachary is 13 now. He is nonverbal and he needs constant oversight and care. He has attended several schools and has received both in-patient and out patient care. It has been a difficult journey, but Zachary’s family has finally found the right school and support programming for him.
At the time of the original diagnosis, Travis said, he remembers the pediatrician saying that he and his wife needed to schedule at least one night a month alone to keep their marriage intact. Without that, the doctor told them, they would come back to him within five years and tell him they were divorced. For Travis and his wife, it took four years.
Their marriage ended, and Travis became a single parent to Zachary while still moving with the Coast Guard and trying to get the care and services his son needed.
He went on to South Florida, then Kentucky, then to Virginia. Each move, like for every military family with a child on the autism spectrum, the Ridgeway family has to start from scratch to find new schools and new treatment.
Re-establishing services can take months, Travis said. And even then the changes in treatment can be drastic – for example, going from 10 hours a week of therapy to only two hours per week because that is all that is offered. Or it may mean a parade of new therapists, which is disruptive to kids like Zachary who need consistency.
And each time they move, Zachary regresses. This time, it got so bad that Zachary needed reminding of every step it takes to get a cup of water.
The move to Virginia was especially arduous. Not only was Zachary regressing, he was also getting extremely frustrated and agitated in his new school.
“The first 6 months of my time here was totally challenging,” Travis said.
Because he was so agitated and frustrated, Zachary was acting out and aggressive at school. The school would call repeatedly for Travis to come take him home. Zachary was suspended twice. He started to try to harm himself and others. Travis needed help for Zachary, and he and the doctors were coming up empty.
“Because he is nonverbal, they could not find anywhere to take him,” Travis said.
They finally found a developmental pediatrician who could provide a referral to an inpatient facility. It was not the best solution, but they could not find a better way without Medicaid assistance from the state. And that was slow in coming, Travis said.
They admitted him.
“It was the hardest thing that I ever did,” Travis said, his voice cracking. “We didn’t know anywhere else to turn to.”
Travis has remarried, and his wife is a nurse. So she continued to advocate with Zachary’s medical team about his medications and treatment.
Meanwhile, they traveled two hours each way to see their son on weekends. Zachary spent his 13th birthday at the hospital.
Finally, after about two months there, the Medicaid came through, and they were able to hire an in-home personal care aid.
Zachary came home.
The aid helps care for Zachary five hours a day.
“This has been a huge help and relieved a lot of stress on the family,” Travis said.
Zachary started at a new school that has a sensory area for kids on the autism spectrum. They also teach the students cooking and life skills. And there are no more calls to come pick him up.
“They say that Zachary is a blessing to have there,” Travis said. “They just love him. It has been a night and day difference for him.”
Now Travis is focusing on helping other families find the resources they need to thrive. He recommends looking into the Coast Guard Mutual Aid grants for both respite care and for communication devices or other technological needs. He is advocating within the Coast Guard to help bring more understanding to what families like his face and ways to streamline the process for getting services. He is looking forward to developing resources documents to help families get the help they need.
“It does affect their work life when they can’t take care of their home life,” he said.
Digging for information
Peggy Haun is on a mission to connect special needs families so they can share their resources and successes to help other families.
She and her husband, Petty Officer Second Class Joshua Haun, are parents to sons Lukas, 7, and Riley, 3. Lukas is on the autism spectrum, and he also has attention deficit hyperactivity disorder and severe allergies.
They were living in Lake Charles, Louisiana, which is a remote location, when they realized that Lukas was experiencing delays. It took a full year to get an official diagnosis.
“We had to drive hours to get it done. It was hard,” Peggy said. “We knew something was up, but we couldn’t get a provider to get definitive answers.”
The diagnosis meant that they could have moved to another area immediately, Peggy said, but that would have been disastrous for her husband’s career. They decided to stay put and try to make it work.
“It was a rough time,” Peggy said, “And there was a lot involved in it.”
Peggy immersed herself in finding services for Lukas. The first step was signing up for the Special Needs Program. Due to their remote location, Tricare paid for an out-of-network provider for Applied Behavior Analysis (ABA) therapy.
“That doesn’t always happen for others the same way.” She said. “We happened to luck out.”
Lukas received ABA support at a school setting five days a week instead of attending pre-Kindergarten. The support took him from being nonverbal to verbal as well as to work on interacting with other kids.
“That was the better option for him,” Peggy said. “He was able to learn better behaviors around other kids, to socialize a bit more.”
And then they moved.
Before the transfer, Peggy had Lukas rediagnosed because his diagnosis was in an old form that did not conform to new codes. She knew that there would be a series of obstacles ahead in reestablishing care in their new home in Baltimore, Maryland, so she tried to clear away as many as she could ahead of time.
Meanwhile, she had to find therapists as well as a psychiatrist for Lukas. She had to call 13 providers in the Baltimore area looking for a psychiatrist – many had waitlists of more than 6 months and five would not see him because he also has autism, she said.
“We finally stumbled on one who would see him,” Peggy said. “That was a week of tears and banging on doors and phone calls.”
She recommends to other parents that they connect quickly with their Family Resource Specialists after signing up in the Special Needs Program. The FRSs are like case managers – they help keep up with enrollment documentation, provide resources, help transition and reestablish services during a move, and they also coordinate with grants with Coast Guard Mutual Aid.
FRSs are valuable, but they are limited to information about the Coast Guard, so Peggy recommends expanding the search. Go to Google, see what other military branches have, look at other military support organizations, connect with other families, look toward social media.
This is where she can help. She started a Facebook page for USCG Special Needs Families to support each other and share experiences and resources. She also participates in the Military Special Needs Network, which has representatives from every military branch.
“You will have to do a lot of digging yourself,” Peggy said. “It’s not easy, but the more you learn, the better it is going to be.”
It can be overwhelming, exhausting, beautiful
Michelle Hernandorena-Garcia and her husband, Petty Officer First Class Ronald Garcia have been responding to their son’s autism diagnosis for seven years now. Matthew was about 3 ½ when he was diagnosed. In the beginning, they relied heavily on their local chapter of the Center for Autism and Related Disabilities. That led to learning how to navigate the school system.
“We’ve dealt with countless doctors visits, therapies and school, making for very intense days both for him and for our family,” said Hernandorena-Garcia. “He has made tremendous progress over the last seven years but it hasn’t been easy.”
At first, before finding CARD, it wasn’t going well. Tricare had just two approved providers for speech therapy. Only one had openings. They weren’t happy with that provider, but the other one had a wait list. They joined the waitlist and started paying out of pocket for a different speech and language pathologist. Two years later, they made it off the waitlist.
“Those two years were a struggle financially, but I couldn’t afford to wait for an opening to get my son the help he needed,” said Hernandorena-Garcia. “The biggest problem I see with Tricare is availability of approved providers. The hurdles to even get approved are so huge that many practitioners will not consider taking Tricare patients.”
These seven years of therapies and doctors have been a challenge – it takes a lot of energy and commitment to find the right system necessary for Matthew.
“We’ve gone full steam ahead as it pertains to getting him the help and support he needs,” said Hernandorena-Garcia. “While it’s been exhausting, we see the difference all the therapies have made in his life and in ours.”
And families need support systems, too, to manage the mental and emotional processes of having a child on the autism spectrum. She relies a lot on social media, specifically Facebook pages, to connect with families who understand the ups and downs of her life.
“That avenue provides a way to vent, share ideas and offer support to others who not only experience life with a special needs child but also have the perspective of being in the military, specifically the Coast Guard,” she said.
It’s okay to feel grief at the diagnosis, said Hernandorena-Garcia. And then comes denial, and then probably anger. At some point, determination rises to the top, she said. Seven years along, and she has found a way to manage the new life her son’s diagnosis gave them.
“There will be good days and bad days. There will be days when you say to yourself, ‘I can’t do it anymore.’ And then the next minute you see your child achieve a milestone, and it gives you that much needed boost to continue on,” said Hernandorena-Garcia. “We weren’t planning for this journey, but there’s beauty in the smallest things that you would’ve otherwise passed right over.”
Autism is a small part of the whole person
From early in his development, Anja Cangemi and her husband, Senior Chief Nyxolyno Cangemi, were concerned about their son Edwin. He avoided social interactions, eye contact, and he had extreme sensory reactions.
“Prior to his diagnosis Edwin only spoke two words—“Dada,” and a word he created to mean yes.” Anja said.
Edwin had a lot of meltdowns, which they weren’t sure were prompted by his difficulty communicating or if there was something else going on. At 18 months old, Edwin started speech and occupational therapy.
But when Edwin was about three years old, after extensive developmental evaluations, they learned that Edwin fell somewhere on the autism spectrum.
Anja got to work trying to understand what this meant.
“Before Edwin’s diagnosis I had little knowledge about autism,” she said. “However, I started researching the area we were residing and looked to see what types of resources were available. I found a support group and joined immediately.”
She enrolled Edwin in ABA therapy, and while there, found a community of other parents who were a wealth of support and resources. (Tricare covered the therapy, but the process took a while to get in place, she said.)
Her experience tells her that early intervention was key for Edwin. She would tell other parents to get on waitlists right away, try techniques at home, look for support in as many avenues as possible, and tailor therapies to your child’s interests. For example, Anja found inclusion groups for Edwin who now participates in youth soccer and in community theater.
“I wish that families knew that individuals with autism are capable of doing much more than people give them credit for. Individuals that are on the spectrum are extremely bright and loving and want very much to be a part of society,” Anja said. “It only takes acceptance and kindness from other neurotypical individuals to see passed the exterior and focus on the incredibly unique interior of each person living with autism.”
Edwin has gone on to a mainstreamed program in school where he is academically ahead of his peers. He no longer attends speech, occupational or ABA therapies. He is reading above grade level, and he has positive social interactions with his friends.
“He will always have autism, but it is my job as his parent to ensure that I do all I can to solidify a great foundation so that he can and will be a functioning person in society,” Anja said. “Autism is a part of who he is, but it doesn’t define who he is.”
What resources do you use the most? What advice would you give other families? Share your thoughts in the comment section below!
- Special Needs Program: Families with a child on the autism spectrum must register with the Special Needs Program to ensure that they are given a category that ensures they move only to areas with available services. A list of FAQs helps families get started.
- Family Resource Specialists: These are the key people who act like case managers – they help keep up with enrollment documentation, provide resources, help transition and reestablish services during a move, and they also coordinate with grants with Coast Guard Mutual Aid.
- Coast Guard Mutual Aid: CGMA offers special needs grants. One is for general financial assistance, which could mean camps, sports, adaptive equipment, or assistive technology devices. Another is for up to three months of respite care.
- Tricare and autism: Tricare covers treatment for beneficiaries diagnosed with autism spectrum disorder. Tricare is currently engaged in a Comprehensive Autism Care Demonstration, which will evaluate how well the current treatment plan works.
- Extended Care Health Option: ECHO is a supplemental insurance that applies to families enrolled in the Special Needs Program that picks up where Tricare leaves off.
- Center for Autism and Related Disabilities: CARD has 119 locations in 24 states and focuses on out-patient Applied Behavior Analysis. The website also has a wealth of information about research and resources.
- Applied Behavior Analysis: ABA is a therapy that helps positively change behaviors. The behaviors can range from watching or listening, to more complex behaviors like interacting with others. Tricare covers it for those diagnosed with autism spectrum disorder.
- Autism Speaks
- Military Special Needs Network: This peer support network has representatives from every military branch to assist families with information and resources.
- Operation Autism: Sponsored by the Organization for Autism Research, this resource is specifically for military families.
- Project lifesaver: This group provides small personal transmitters to families of people who many wander off. It allows caregivers to more quickly find them if they should go missing.
- Nicklaus Children’s Dan Marino Outpatient Center: Several of the families featured here who have been stationed in South Florida mentioned the center as an excellent resource for information and a place they found great support and help.
- Navigating the Special Needs Program: This previous From the Homefront story explains how to sign up with the program and how it works.
The views expressed herein are those of the author and are not to be construed as official or reflecting the views of the Commandant or of the U.S. Coast Guard.