Monday, January 5, 2009

Autism, Peanut Allergies and Cochlear Implants

This is an article I wrote for Midwestern Family Magazine. The magazine can be found at Barnes and Noble in Central Illinois. If you don't live in the area and want a copy, just send me an email! 

Three women making money by helping others!

Get ready to be inspired to do more for your kids. You are about to be introduced to three women who faced terrifying health concerns head on. Their families all got bad news about their kids, and turned to their own creativity and resourcefulness to help themselves and others. They might just be able to teach us all a few things about why moms are so irreplaceable.

Finding Solutions and helping others

It was very difficult to get a hold of mom, wife, and web editor Michelle Tjelmeland from Springfield to do this interview. When we finally did touch base, I was surprised to hear she has a crisp, easy to understand voice. I mention this because Michelle is deaf in both ears. She slowly started losing her hearing around 17 years old

Don't take "no" for an answer. Mommy instinct prevails!

Michelle’s daughter is the motivation she needed. She was pregnant with Ellie when she got to the point where she couldn’t hear at all. Then her little girl arrived three months early. Michelle immediately wanted her baby’s hearing tested. “I requested about a dozen times for her hearing to be tested. I took her to nine doctors in the area who confirmed her hearing was perfect and I was being paranoid. But I didn't quit. I knew my instincts were right.” Michelle found a retired leading expert in hearing loss. “I told him I had bought a plane ticket and he needed to see my daughter. Within two hours of testing her, he confirmed she was born profoundly deaf.” said Michelle.

Moms need to talk to other moms

Michelle was horrified thinking about her daughter going through what she had. She tried researching different options, but the Internet was still new at the time and she felt all alone. “I just wanted another mom who had a child who is deaf to talk to,” said Michelle.

Visits to the library, numerous phone calls, and several dozen doctors appointments later, Ellie and her mom both ended up getting cochlear implants in their ears.

“There are no guarantees with this surgery, you're taking a big risk.” said Michelle. There are many factors, including cost, that come into play. “Between me and my daughter, we have spent a million dollars on our ears,” said Michelle.

Ellie, now 10, and her mom are two of only about  300 people nationwide who have bilateral cochlear implants. She remembers how she felt all alone making this decision because no one else she knew was had gone through this. Michelle now calls herself and Ellie cochlear implant rock stars.

Michelle created www.iloveellie.com so others moms with deaf children would have a place to turn for answers. Michelle said, “Every time a mom calls me, I talk to them. I stop when I am in the middle of what I am doing because I know how it is. They are scared. They don’t know what to do. They ask me about my daughter and how I got through it. I make my world stop to give them a little hope and inspiration.”

Helping others helps moms heal

Michelle now answers about 150 emails a month and has counseled more than 400 families who are dealing with hearing loss.  She also created the non-profit Cochlear Implant Awareness Foundation at www.ciafonline.org. Michelle said, “We do things that you typically wouldn't find anywhere else. A lot of times the cochlear centers aren't in town. We will pay for gas cards and hotel stays. Once in awhile we will pay for batteries and accessories that come with cochlear implant devices.” She’s just one mom who took the time to figure out how she could improve her child’s life and now she helping hundreds of others.

This is no ordinary cookie maker

Bridget Lane is an energetic mom of three boys who all have autism, two of which are identical twins! Bridget said, "When my oldest son was diagnosed it was pretty overwhelming. Then my younger twins were diagnosed." Instead of feeling sorry for herself, Bridget decided she was going to do something to improve the situation. "It's almost like you have to recognize it's hard and it stinks, but at the same time, you have to put that aside and think, ‘how can I make a difference for my children and the community?’ You can do it. I am living my dream."

That's how Helping Hands Bakery was formed at www.onemomonamission.com.

"I had been making gluten-free cookies for about a year and I always wanted to be an entrepreneur." Bridget isn’t focusing on what her kids can’t do; she’s discovering what they can do. She is thinking about her kid’s future - finding work for adults with special needs is never easy and there are only a handful of employers who offer those positions. “I thought, this will give my kids a job when they're older. This will be an option for other kids with autism.”

Bridget grew up in Peoria, but now lives in Denver, Colorado. She formed the non-profit Helping Hands Bakery last August. She donates $.50 out of every large cookie and $.25 out of every small cookie, and has already raised $1400 for her local community. “I give away most of the profits. We only keep a tiny bit to keep us running.”

Bridget is determined not to let autism be an excuse for her kids to be left out.  "I want them to know they are special, but they should be included in everything.”  The family business is giving her kids the confidence they need. “We have high expectations for them. I am still going to take care of them, provide them with what they need, but they will be taught to give back to the community, "said Bridget.

No peanut butter and jelly for this family!

Imagine never being able to say, “Let’s just go out to eat.” For families with food allergies, they don’t have that choice. They have to make sure their kids don’t eat or touch something that will cause a potentially life-threatening allergic reaction.

Stephanie Kroodsma is a parent who thinks about this daily. Her four-year-old daughter Gloria is highly allergic to nuts and eggs. If she even touches something that once had nuts on it, she could go into anaphylaxis shot.  The Kroodsma family found out the severity of Gloria’s allergies when she was one-year-old and got a flu shot, which contains an egg derivative. Stephanie said, “She broke out in head to toe hives, and her airway was starting to close. We went to the emergency room where she got epinephrine shot.”

A life changing moment

“From the moment they are diagnosed you have to come home and clean out your house. We have an egg free, nut free house,” said Stephanie. She spends hours at the grocery store carefully examining the ingredients in each package. She says right now there are about 14 words that mean “this product contains eggs.” She also has to be concerned about things that were made in the same factory as products that might contain those two ingredients. Stephanie said, “The epi-pen buys you about 15 minutes to get to the emergency room. If you don't read a label carefully, it could be life threatening.”

Finding common ground

Stephanie spent the last three years trying to figure out what her daughter can eat, where she can play safely, and what is offered to help other families in the same situation.

She started PeoriaFoodAllergyParents@googlepages.com for families to have a source of support.“You get the diagnosis and you are sent home completely on your own. Most of us in the group received our education on line. That's nice, but sometimes it's better to know people in the community. You can ask them about different places that are allergy friendly.”

So far there are 27 families in the Peoria group. Stephanie says anyone in the surrounding communities is also welcome to join. It is not only a place to find allergy friendly businesses, it’s a place for parents to vent and tackle all the challenges that come with food allergies. “A lot of things are going to change. Hopefully things will be labeled better in the future,” said Stephanie. Until then, the families have each other to lean on.

You are not alone 

Michelle, Bridget, and Stephanie can teach us all a lesson on how to make the most out of any situation. They faced major family challenges but found ways to confront those challenges. They still have days where they wish their kids didn’t have special needs, but most of the time they focus on what they do have: Great kids who will become great adults because their parents didn’t give up.

-NewsAnchorMom Jen

2 comments:

Diana said...

Very cool! All three of these ladies are awesome for helping others through what they have been/are going through. Thanks!

newsanchormom.com said...

Thanks for reading the article Diana. These women were amazing and so inspirational. I enjoyed talking to them!

 
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