Momazing Monday: Mother Creates Positive Change Through Son’s Autism

Crystal (center) with Chloe (right) and Dylan (left)

In many ways, Crystal Hinnen is just like any other average mom, battling typical problems with her kids. She is often up with her son in the middle of the night, or early in the morning, after only several hours of sleep. She’s also working with him on potty training, a difficult task all moms can relate to. But here’s the thing. Her son Dylan isn’t a toddler, as you might expect. He’s 12. And he has autism.

Fortunately, autism is now a familiar term, thanks to awareness campaigns and educational efforts. But autism isn’t a buzzword, or a celebrity cause, or just another charity 5k. Autism is real. And families who care for a loved one with autism will tell you it affects everything. Everything.

Crystal Hinnen, preschool teacher, wife to Travis and mom to Chloe (13) and Dylan (12), loves being a mother. “(My favorite things are) hearing the giggles down the hall and watching them grow,” she said. “Chloe is turning into a loving helpful good-deciding fun young lady. I also enjoy seeing the things that Dylan has learned, that we never thought he would be able to do. Like ride a bike, or potty train.” She adds, “He’s still working on potty training, but he’s gotten so much better.”

If it sounds like Crystal is a positive person, she most certainly is. Her positive outlook helped her not only survive, but thrive, while doing double duty as a single parent. “I put myself through college during all of this. I would do my homework when the kids went to bed. They were and are and always will be my life! I had some things to prove. And I did! But it’s all about your attitude too. I enjoy my life, I know that it had its rough parts, but I know that I was meant to be here. Not many people could handle my situation.”

Crystal and Travis married last year. “He’s the best dad EVER!”

I know Crystal is definitely right about that. Every time I see her, she’s happy. And she’s so proud of her kids. Both of them. I can’t imagine what it must have felt like when she first heard Dylan’s diagnosis, but knowing Crystal, she didn’t let it get her down for too long. Before Dylan was diagnosed at one and a half, Crystal thought he might be deaf. When we did the hearing test, the woman administering the exam was shocked that Dylan was able to hear. He did need tubes, but he could hear. That was a start. They were then sent to a neurologist, who practically took one look at Dylan and knew. Although Crystal’s initial reaction was denial, “There’s nothing wrong with my child, although I knew there was,” but she soon went to work to secure all possible resources for Dylan.

“Futures Unlimited came to the rescue with their in-home services for children under three. They came to the house and worked with him. He then went to ECD (early childhood with disablilities) classroom for preschool. He has been going to school in Goddard since kindergarten and will be in middle school this year.”

Middle school. This period is tough for any child, let alone those with autism. But then again, nearly every stage of Dylan’s life has been difficult, due in part to a lack of resources for playtime. He’s also non-verbal, meaning he only makes sounds to indicate his needs, or will bring the item in question to his caregivers. Crystal’s mom Cheryl decided to take action. Her initial idea was to make a camp where families with children with disabilities could go and just relax. Where people didn’t look at you funny because your child was making noises. But, we decided that our first project should be smaller.”

Thus began the non-profit known as Dilly’s Place, an effort to build a boundless playground in Conway Springs, Kansas, where children of all abilities can play together. “We knew how difficult is was to take Dylan anywhere. Dylan was such a runner when he was little, that we would take him to a neighboring community because their park had a fence. Chloe came up with the name. She is the best big sister EVER!”

Dilly’s Place is off to a phenomenal start, thanks to generous donors, and a supportive community. Crystal can’t express enough her gratitude for her hometown, where she says, “We live in a great community. And they pretty much all know Dylan, so nobody says awful things. I love Conway Springs! People look out for Dylan and will call if he has jumped the fence or is running around in the nude.” She quips, “It’s never boring around here!” She also credits her husband Travis (they were married last year), with being key to her success. “I have a GREAT husband, and he is the BEST dad ever!”

I hope for Dylan’s sake, and Crystal’s sake, and our entire community’s sake, that Dilly’s Place is a success. After all, it’s not just children with disabilities who will benefit, but all children. Children like mine. This incredible mother has taken a life-altering diagnosis, and has used it to benefit others. That’s truly momazing.

If you’ve been touched by this story, and would like to make a donation to Dilly’s Place, please reach out in one of the following ways:

– Dilly’s Place , PO. Box 633, Conway Springs, KS 67031
– dillysplace@rocketmail.com
Dilly’s Place Facebook Page
– Call Cheryl at 620.456.2123 or Crystal at 316.648.7763      

Momazing Monday: Mother’s Intuition Leads to Life-Saving Diagnosis

The fact that this photo even exists is a miracle. Dani with her sweet Katie.

“Before I had children I thought stories about ‘mama radar’ were exaggerated but nope. Whether it’s a fever, a white lie, a child getting ready to blow chunks in a movie theater while watching the end of Madagascar 2 (true story), or the tell-tale signs of a rare brain disorder, mama knows.”

These are the words of Dani Stone, a mother who knew. She knew something was terribly wrong with her infant daughter, even though the doctors told her otherwise. She kept telling herself, “They’re doctors. If they’re not worried, I shouldn’t be worried.” But she kept worrying. And her daughter is alive today because of that mother’s intuition.

Dani, freelance writer, editor (Book End Babes) and Community Manager (Book End Babes and Buzz Books USA), has been married to her husband Doug (Dougie) for 14 years. They were blessed with two lovely children, Jacob (11) and Katie (7). “I love these babies so much. Yes, I call them babies and tell them I will continue to do so until they have their own babies.”

The more I’ve gotten to know Dani, the more I like her (which is probably true for most people who make her acquaintance). We’re both mothers, writers, and now I know, we’re both worriers. But being a worrier isn’t always such a bad thing. (And it kind of sounds like warrior, which gives us a little more street cred.)

“I had a nagging suspicion that something was wrong and felt frustrated no one would listen to me. When Katie was born she had a nickel-sized vein in the middle of her eyes. I stared at that vein EVERY DAY. Then, it started to grow.  At each well-baby checkup our doctor said, ‘She has a big head and thin skin. She’s fine.”

She was not fine.

Graphic courtesy of Center for Endovascular Surgery http://neuro.wehealny.org/endo/cond_vein-of-galen.asp

After Dani’s insistence that Katie be further evaluated, an MRI finally revealed a devastating diagnosis, Vein of Galen Malformation (VOGM). This rare disorder, often referred to as a vein of Galen aneurysm, is a rare blood vessel malformation in the brain that occurs before birth. With these types of malformations, the patient lacks capillaries to slow the blood flow  between arteries and veins. As illustrated, without capillaries, blood is shunted directly in to the vein at a high output. This increases the workload of the heart. If left untreated, VOGM often results in abnormal brain development, mental retardation, strokes, seizures, paralysis, learning difficulties, hydrocephalus and ultimately cardiac failure and death.Death. No mother should ever be faced with their child’s mortality, especially at such a young age. Babies with VOGM, without treatment, rarely see their first birthday. Katie literally had a ticking bomb inside her head and the Stones had no idea where to turn, except to the internet. There, they found a doctor in New York City. Miraculously, after three embolization treatments over three years with with Dr. Alejandro Berenstein, Katie was VOGM free.

Katie with her awesome big bro Jake.

Around the Stone’s home, they have the word, “Believe” prominently displayed in several places. As they dealt with Katie’s diagnosis and treatment, they kept that word in their minds but not in the way most people think. They had to BELIEVE that whatever happened to Katie was meant to happen. “It is as it was ordained to be,” once said a woman who helped guide them to Dr. Berenstein, even though her own son died from complications resulting from VOGM.

Last September Dani created the VOGM Parents Alliance,  as a way for parents to connect, learn more about VOGM and find qualified surgeons who treat the disorder (there are very few). “There are times when I feel a panic attack coming on because a certain story or circumstance will be eerily similar to ours but Doug and I made a vow to pay it forward so I listen, and encourage and point them in the right direction. We know the statistics. We know our outcome, that is, Katie being diagnosed late but still being cured with no long-lasting side effects (palsy, neurological defects, blindness, seizures, mental retardation) is rare.”

She is the exception, not the norm. “To those whom much is given, much is expected.”

So what helped Dani find the strength to not only see her daughter through this ordeal, but to reach out to others?

“My main source of strength as I’ve dealt with VOGM has been my trust in God, my Dougie and my family, in that order. During the course of Katie’s treatment Doug and I never said to each other, “It will be okay” because by that time, we knew too many parents whose children had passed away from VOGM. We knew there was a good chance it wouldn’t be okay so we simply prayed for strength.”

Dani and Doug found strength in each other.

Even though Dani and her husband had braced themselves for the worst, the worst didn’t happen. Their prayers for strength were answered, too, as they found a way to endure countless sleepless nights, long flights back and forth to the East Coast, expensive medical treatments, and found the courage and goodwill to help others walking down the same path. The signal on Dani’s ‘mama radar’ came in loud and clear. And she not only listened, but acted, despite what the ‘experts’ told her. Her intuition saved her daughter’s life, and her selfless desire to help others will no doubt save the lives of other children, too. She is a mother who whole-heartedly loves her family, and this crazy thing we call life.

“A long time ago I heard a quote about parenting and it continues to resonate with me,” Dani said, “Everything is a phase, the good and the bad, so remember the good, get through the bad and cherish everything in between.”

Momazing Mondays: I’ve decided to put my creative skills to use and tell the stories of mothers who are truly unique, inspirational and amazing. If I have enough stories, I’d like to post one at the beginning of every week. Please send me an email at catherine DOT poland AT gmail DOT com if you know of a momazing mother. Read week #1 story “Momazing Monday: Mother of Nine Proves Quantity and Quality are Possible” and week #2 story “Momazing Monday: Mommy Wars Don’t Matter – Mommy’s At War.” 

Momazing Monday: Mommy Wars Don’t Matter – Mommy’s At War

A nearly 20 hour commute. Months (not weeks, or days, or hours) away from home. Desperate to hear your child’s laughter, babbling, crying, whining, anything…not desperate to escape for a few hours.

This is the reality for Tashina Miller, a medical service corps officer, serving as a Licensed Clinical Social Worker at a small Forward Operating Base (FOB) in Afghanistan. She serves a vitally important role on the Combat Stress Control Prevention team, providing counseling, education, traumatic events management, united needs assessments, and prevention classes to service members and their commands.

Image

Mommy=Freedom. I teared up when I saw her caption on this photo from her Facebook page: “Wish I could be hugging this guy :)”

Tashina is also a mother. Her son Cooper is 16 months old and her affection for him permeates her correspondence with me. “(Becoming a mother) really does change your entire life, a change I would never take back. I guess the thing I love the most is; the way your child can just look at you and nothing else matters.”

Her story is hard to tell without tearing up. And they’re not necessarily sad tears, but happy, proud and patriotic ones. She is not only supporting her own son, but her work supports sons and daughters of other caring mothers who worry about their child being off at war. She’s good at both of her jobs.

“What I love the most about my job is being able to assist those heroes who have raised their right hand to defend their country. I admire their sacrifice to their country and believe they deserve the best services possible.” She also maintains her sense of humor, adding, “Not having to decide what to wear every morning is also a bonus; you
just put the uniform on and go.”

Tashina didn’t necessarily know motherhood was in her future when she enlisted in 2008. “It was a conscious choice to have a child knowing someday I might have to leave. I looked at all these male soldiers and they leave their children all the time. I thought, what should make me any different?”

Her limited time with her son means that every moment matters when they’re together. “From the moment my son came into the world I tried not to take any time with him for granted. I am sure all parents feel this way to a point; however, it seemed like a real focus due to my situation. I hope someday my son will be able to understand why I had to go away and be proud of the work I have done. I tell people I would never choose to be away from my son; unfortunately, the very important work I must do often takes me away from him.”

Although my heart swells with pride for her and her mission, it also breaks. While I’m bemoaning having to hear my toddler ask for “Fresh Beat Band” for the 20th time today, she’d probably give anything to cuddle on the couch and watch anything 20 times in a row with her son. She won’t see her son in person until February 2013. Just one day away from my girls and I can’t wait to put my arms around them. I can’t imagine she’ll let her son down those first few days after she comes home.

While most of us “civilian” moms wrestle with the issues surrounding the “Mommy Wars,” she’s actually been at war. A real one. In another country. Far, far from home. 

Tashina, her husband Kyle, and their son Cooper share a strong bond.

So how does she manage? “Juggling relationships and work gets difficult; not only as a mother but a wife. Again, I keep in mind to take nothing for granted. My husband posts thousands of pictures on Facebook. We Skype two to three times a day (when the internet is working). My son gives me kisses over Skype and sometimes hands me toys and food. My husband often follows him around with the computer while he plays. I have mementos and pictures I brought with me. Before I left home I read and recorded books for my son and hung pictures up of the two of us.”

And like any deployed father relies on his spouse back home, Tashina fully appreciates the load her husband bears. “There are no words to describe how supportive and completely awesome my husband is. He is very proud of the work I do. He doesn’t like the separation and wishes I was home but, knows how important my work is.”

Deployed moms are somewhat of an enigma. Rarely mentioned and often misunderstood. “We are like any other moms making sacrifices for our children and country to give those we love the best life possible.” While she may be like other moms, she certainly isn’t ordinary, but extraordinary.

Tashina with “Major Zack,” a therapy dog she uses during sessions.

She wants to share this advice with other moms in her shoes (or boots, rather). “You and your children can survive a deployment and maintain a good relationship. Military children are some of the most resilient children I have ever met. As a mom, you think leaving is going to kill you but I am still alive. Being away makes me focus on the little things I can do for my son and husband.”

Tashina, from me and so many others, thank you. Thank you for serving not only our country in such an important way, but for being such an amazing mother, raising a brave new generation of children. You are not only your son’s hero, but mine, too.

Momazing Mondays: I’ve decided to put my creative skills to use and tell the stories of mothers who are truly unique, inspirational and amazing. If I have enough stories, I’d like to post one at the beginning of every week. Please send me an email at catherine DOT poland AT gmail DOT com if you know of a momazing mother. Read last week’s story “Momazing Monday: Mother of Nine Proves Quantity and Quality are Possible.