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March 28, 2016

Capes that Care ›  


Meet Abby J.

Capes that Care for National Autism Awareness Month

With National Autism Awareness month just around the corner, we are excited to launch our new Capes that Care campaign featuring an amazing mom, Abby J., whose son Jack was diagnosed with autism close to a decade ago. Since Jack is now 10 years old, that decade of living with autism has made him and his mom an incredibly amazing pair. They have learned so much through trial and error and are now ready to share their story with others. Moms are often perceived as heroes by their kiddos for a multitude of reasons. Abby’s story, which demonstrates a new level of patience, endurance and hope, will undoubtedly show you why she is a hero to her son and so many others.

Autism is the fastest growing developmental disorder. It impacts the normal development of the brain in the areas of social interaction, communication skills, and cognitive function. Individuals with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. Autism now affects 1 in 68 children and boys are four times more likely to have autism than girls. About 40% of children with autism do not speak. Autism greatly varies from person to person (no two people with autism are alike) and therefore trial and error and perseverance are key in finding treatment.

Abby is a mother of three handsome boys. The oldest of them, 10.5 years old Jack, was diagnosed with Autism when he was a toddler.

Abby did wonder at times if there was something unique about Jack’s behavior but despite these early warning signs, the pediatrician deemed Jack’s behavior as “playful and spirited.” It wasn’t until the family moved to the Madison area and had access to The Waisman Center, a pediatric development clinic, that Jack was diagnosed with autism.  His was a unique case in that he exhibited many signs of Aspergers Syndrome, but his early language delays, and a few other symptoms led four different doctors to settle on an Autism diagnosis. The lead doctor at Waisman advised that they treat the symptoms that troubled Jack (sensory issues, toileting issues, anxiety issues, hyperactivity, etc.) separately rather than tackling the condition as a whole.

Please take a few minutes to learn about Abby and her emotional journey.

SAMIMAY: What resource did you find most helpful after Jack’s Autism diagnosis?

Abby: As anyone in this digital age, we were inundated with countless books/doctors/therapies/pills which *could* help. It took a few weeks to decide where to start. In my searching, I had come across The Feingold Association, created by a physician in the 1970s. Feingold researches additives in food and the effects those additives can have on humans, mainly children. Getting rid of all artificial colors, flavors and preservatives from our meals seemed a daunting task on top of having 3 kids in diapers and all our other daily challenges. But I rationalized that it wouldn’t cost much and I couldn’t come up with a single source to suggest that taking food dyes out of my child’s diet could be harmful. So we started there.

At first glance it seemed we could just read labels to help clean up our diet, but I learned food label laws still allow for some fibbing as to what is actually on the ingredient list. So we ended up joining the Feingold Association which gave me a shopping guide with thousands of foods that were guaranteed safe. We relied heavily on that book for our early Feingold grocery days! I will never forget the day I came around the corner of the grocery store and saw another mom shopping with her book. Instant connection! But more importantly, I had access to thousands of other Feingold families across the US and beyond whose kids were also struggling through their days. Whose kids were finding tremendous success in a shift towards more natural foods. 

To say our family found success would be a wild understatement. Jack’s raging fits started to subside. He let me cut his hair. He asked for socks and cookies and Curious George. He slowed down. He slept past 5 am. And on day four, he looked at me and for the first time in his life told me he loved me. 

We never looked back.

Feingold definitely did not cure Jack’s Autism, but it took all of the unnecessary emotion and rage away from everyday tasks like choosing a cup, getting dressed, walking through a store, etc. 

It opened the door for him to be able to tolerate the lengthy treatments and therapies that consumed our next two years. It allowed him, over time, to verbalize what he didn’t like about wearing socks or hearing loud noises. And that dialogue really helped his therapists fine tune their time together and help him finally feel better.

SAMIMAY: How did Jack’s Autism change your outlook on motherhood?

Abby: Pre-diagnosis, I didn’t feel like much of a mom at all. I felt like a frantic person living with a child whose behavior made no sense yet took 95% of my energy. I was racked with guilt about not spending enough time looking at my other two sons. But right after his diagnosis, when Jack started doing well in therapy, a beautiful calm and confidence arrived. I was easily able to toss out my pre-conceived plan of what time with my kids would look like: Cross off Disney. Replace with Colorado hikes. No to the Children’s Museum. Yes to long afternoons painting our driveway with water soaked paint rollers. No to organized gymnastics classes. Yes to vacuuming the sample carpeting at Sears for as long as they’d let us. And it was all just absolutely fine. Honestly, I think our shift to simple family-oriented activities was exactly what we needed to repair the stress of those first few years. 

SAMIMAY: What are some of the challenges you go through when caring for Jack?

Abby: Jack’s early years were easy on no one. He didn’t sleep for longer than a couple hours at a time (for over six months!). He ran away at parks, at stores and from our house. He was obsessed with non-toddler-approved household items like lawn mowers, vacuums, springs, strings, door locks, etc. He didn’t feel pain and would cut himself on sharp corners and vents over and over. He never looked at me. He refused toilet training for quite some time and was still in diapers when my second and third sons came along.  He also did not tolerate haircuts, or nail clippings or wearing weather appropriate clothing. The daily screaming sent my two younger boys into their own fits of anxiety. And on the few occasions we had a house guest, the raw emotion in those outbursts made each of my house guests cry. The hardest part of all of that however was being alone with it all.  My family did not live close, he was not yet in school, my husband worked long hours and I had no friends within 3 hours of my house. It was very isolating.

But that was then. Jack is 10.5 years old now and the challenges of getting him dressed and groomed are long gone. We are no longer drenched in therapies and protocols. Now we deal with much more typical things like managing homework, building friendships, expressing himself and repeating, “NO! You cannot have a cell phone yet”! 

Oh, his Asperger’s side still shines bright. His speech is formal, some motor tics come and go, he loves to repeat things he has heard and he still loves vacuums so much he dressed up as James Dyson for inventor day. He perseverates on inanimate objects and he really hates last minute schedule changes. But he understands when his brothers say, “But I don’t want to talk about your new wireless keyboard anymore”. He is (mostly) able to hear no and move on. He is comfortable in his own skin and clothes and environment. He is happy and able to talk about his day and thoughts and worries. And that has made all the difference.

SAMIMAY: What experience/wisdom would you like to share with other mothers of children with Autism?

Abby: First, I would have to say trust that little voice inside your head. You know the one. It’s the one that whispers, “Do it!” or “Buy the shoes!”. Sometimes it whispers less fun things like “Autism” or “Something is not right”. Listen to that voice. It’s almost always right on. 

Second, if you find yourself staring an Autism diagnosis in the eyes, do everything you can! Different strategies work for different kiddos and if you don’t try them, you’ll always wonder! We hit dead ends with DAN (Defeat Autism Now) doctors and extra supplements. But we had huge success with occupational, behavioral & speech therapies. And of course, our biggest success was with diet changes. I have friends who experienced the opposite! Make your list and work your way through it until you find the right solutions for you and your child! 

And last, be kind to yourself. Of course you will spend many nights face deep in your computer. You will forget your spouse over and over again. You will lose or gain weight or stop talking to friends. But those days will subside. And when they do….Put on those shoes that little voice in your head made you buy and do a few things for you. Find your new normal and run with it!

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We are honored to feature Abby on our blog, and as a thank you we’ve sent her one of our capes. Because #EveryHeroNeedsaCape.  Additionally, in order to commemorate the National Autism Awareness Month, we will donate 50% of our online sales to Feingold Association as they provided life changing assistance to Abby and Jack in their battle with autism.

Thank YOU for reading! Thank you for considering making a donation! Through April 30th, SAMIMAY will donate 50% of all online revenue to Feingold Association.

 

To learn more about autism, please see the below links:          

http://www.autism-society.org/

http://nationalautismassociation.org/resources/autism-fact-sheet/

 

Thank you,

SAMIMAY Team

 

 

October 26, 2015

Capes that Care ›  


Meet Shalee Cunneen

Capes that Care for National Epilepsy Awareness

 November is the National Epilepsy Awareness Month and we're wondering how much people really know about Epilepsy.  To be honest, 5 years ago, we knew very little about it.  Today, however, we know a ton more thanks in part to our close friend Shalee and her daughter Ella.  We have learned that 1 in 26 Americans will develop epilepsy in their lifetime. 200,000 people are diagnosed with it each year worldwide and for more than half of them the cause is unknown.  Approximately 66% will find a way to control seizures (most frequently with side-effects) and 34% will not find a way to control them.  We found these statistics overwhelmingly unfair especially if you can imagine having seizures, now knowing why and not knowing if you'll ever find a cure for them!  During the past 5 years, we also have learned that people suffering from epilepsy, whether having the condition or assisting someone who does, are truly amazing, resilient and selfless HEROES.   We also have seen that despite the lack of answers about their condition they figure out how to carry on and can live great, meaningful and happy lives, especially if they have support from family, friends and community who CARE.

          This month’s Capes that Care initiative is dedicated to Shalee Cunneen whose 6 year old daughter Ella has been suffering from epilepsy for the past 5 years.  Ella, who had her first seizure the day after her first birthday, has undergone countless tests, therapies, drug trials and even a special diet in efforts to stop her seizures.  Her doctors have tried to locate the area responsible for the seizures in hopes to surgically control them but still to no avail.  Ella has been seizing every 3 to 4 days which has caused her to have severe developmental delays.  Amazingly enough, Ella is an extraordinary trooper as her spirit is unbroken and her smile is as contagious as they get.  Similarly, although we’ve seen Shalee concerned or sleep deprived at times, she always has seemed ready to rise to any challenge coming her way and has become one of the toughest, most resilient moms and supporters of all epilepsy-related initiatives and research.  Shalee is a rock for Ella and her entire family and has inspired so many others through her dedication and hard work for her family and this cause.

 

Meet Shalee Cunneen in our short interview:

SAMIMAY:  You and Ella share a special bond which you can see in your interactions and even in pictures.  What do you admire the most about your daughter?

Shalee:  Everything!  She really is my inspiration and a constant reminder not to sweat the small stuff.  She is the sweetest and most brave little girl I have ever met.  She endures so much, yet still has a smile that can light up a room.  I love that we get into elevators where everyone is staring at the wall, and then Ella starts telling everyone “Hi! Hi! How are you?", and she keeps on going until people respond.  It really makes people smile and I just love how much joy she brings everyone.  She loves going to the doctor and having her vitals taken, and she offers her arm up for blood draws and isn’t scared one bit.  Afterward she always looks at me and says “brave.”  She is so much braver than any child should ever have to be, and that breaks my heart, but at the same time I am so incredibly proud of her and so lucky to be her mom. 

SAMIMAY:  What is the biggest challenge for you as you're supporting your daughter Ella in her fight with epilepsy?

Shalee: There are many challenges that we face daily however the biggest is not being able to stop her seizures. It is so hard to be so helpless and just watch her go through this.  Her seizures typically last 20 minutes, and it never gets easier to see one.  I also don’t know how she feels from all the medications she takes, as there are so many side effects with each drug. She cannot always communicate effectively how she feels, so she will often say “knee hurts” or “boo-boo” as those are phrases she hears from us, asking her if her knee hurts after a fall or if she has a boo-boo.  It is heartbreaking to be doing everything I can to help her, but that not being enough.  It is also hard to see Ella so developmentally behind her peers and the unknown fear of what's ahead for her and us.  We continue to take her to top-notch hospitals and participate in new drug trials, hoping one day for a cure. 

SAMIMAY:  What would you like others to know about epilepsy?
Shalee:  Epilepsy can affect anyone, at any time.  It does not discriminate at all, and there are so many types of epilepsy that affect people.  We didn’t know much about epilepsy when Ella was diagnosed…for example I didn’t know that it could cause severe developmental delays or that people often die from it.  I try to not read stuff on the internet, unless it’s from a very reliable source that Ella’s neurologist has confirmed. I also think it’s important for people to know what to do and not to do when they see someone having a seizure…for example you never put something in someone’s mouth while they are seizing, and you should always lay them on their side and time the seizure.  Epilepsy is not talked about as much as other conditions, and I think this is such a great way to raise awareness! 

SAMIMAY:  Did Ella's epilepsy change you or the way you view life?

Shalee:  Very much so.  My husband and I try our hardest to always remember what is important, and to just live in the moment and enjoy every minute with Ella, and our son Sean.  We try to focus on everything Ella can do, and not what she cannot, or may not be able to do.  All parents understand the worry that comes along with being a parent, but epilepsy takes it to a whole new level.  Ella’s seizures could happen at any time, and therefore she is never left unattended, especially when she sleeps.  When we take a vacation, we always make sure we know where the nearest hospital is, and we only travel places in the US where there are large, reputable hospitals.  It can be hard at times to see others living more care-free lives, however we do what we can and focus on the positives.  Ella is very lucky in that she enjoys life and can still participate in many activities that a lot of kiddos with epilepsy cannot.  Ella loves playing outside with her brother, swimming and she loves the characters and rides at Disney world. We try very hard to not let epilepsy control our lives, however sometimes it just does and we have to be ok with that.  We are also lucky that Ella has a very understanding and loving little brother.  We are optimistic that future discoveries will lead Ella to a seizure-free life but until then we will enjoy what we have!  She is truly an inspiration to us all! 

 

 

We are honored to feature Shalee on our blog, and as a thank you for all she does we’ve sent her one the capes that she picked.  Because #EveryHeroNeedsaCape.  Additionally, in order to commemorate the National Epilepsy Month, we will donate 50% of our online sales to CURE – Citizens United for Research in Epilepsy.  This organization has been doing a number of amazing research projects enlightening the world about the complexities of our brain and specifically how to control different types of seizures.  To learn more about CURE please click link here.

 

 

Thank YOU for reading!  Thank you for considering making a donation!  Through November 26th, SAMIMAY will donate 50% of all online revenue to CURE to help find a cure for Ella.  
 
We humbly ask everyone for prayers for Ella, Shalee, their whole family, and team of doctors and nurses that work with them.

 

To learn more about epilepsy and related inspiriting stories, please see the below links:

http://www.cureepilepsy.org/aboutepilepsy/what_is_epilepsy.asp

http://bit.ly/InspiringStoryaboutSavannahandherMom

 

Thank you,

SAMIMAY Team

 

 

 

 

 

 

September 13, 2015

Capes that Care ›  


Meet Aliza Settecase

Capes that Care for Childhood Cancer Awareness

 At SAMIMAY, we feel that individual and corporate giving make this world a better place.  The reward for offering help is far-reaching as it impacts not only the beneficiary, but also the giver and anyone observing the act.  It betters society as a whole.

In order to be a part of this pay-it-forward movement, and to recognize those serving others in need, we decided to launch a simple giving initiative: Capes that Care.  Periodically, we will choose a charity or fundraiser that inspires greatness through dedication to a cause.  We will choose a person who promotes this greatness through her hard work and compassion. Our program will include a short interview with our guest and, in the month that follows the publication, we will donate 50% of our online sales to her charity or fund. 

As a Thank You for the inspiration through such heroic work, we’ll also present our guest with one of our capes.  Because #EveryHeroNeedsaCape.

 

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This month, to commemorate the National Childhood Cancer Awareness Month, we are writing about our friend Aliza Settecase.  Aliza, a mom of three from Chicago IL, has been recently fighting a battle for her 1 year old son Lukas, who was diagnosed with leukemia at 10 months of age.  Since this diagnosis, this courageous family has faced multiple hospital admissions, unknown fevers, infections, remission and ongoing chemo.  They also have traveled a spiritual journey in which they have found many supporters as well as inner strength.  Aliza and her husband Joel have been writing about their journey in their inspiring blog at PrayForLukas.  Their friends also have started a go-fund-me page to help with the financial burden of the treatment. . 

Meet Aliza Settecase in our short interview:

 

 

SAMIMAY:  What is the biggest challenge for you as you're supporting your one-year-old Lukas in this fight?

AlizaWow that is a tough question!  There are so many difficult parts to this battle.  Being away from my other two kids, Jakob (3) and Anna Sophia (2) has been very challenging.  It has been rough not having quality time with my husband Joel.  Lukas not being able to talk to me, to tell me what is hurting or how he is feeling, has been a real struggle.  But, the most challenging thing has been trusting in the protocol and the doctors and nurses that handle Lukas' treatment and care.  I can be a control freak, so realizing that I have no control over this situation and the outcome is very hard.  

 

SAMIMAY:  What would you like others to know about a fight with cancer, especially childhood cancer?

AlizaWell, I currently have cancer as well.  I was diagnosed with Thyroid cancer when I was pregnant with Lukas and because I wanted to nurse him, I have prolonged my own treatment.  So, I can share that the fight for cancer is different for everyone.  There are the physical challenges of surgeries and treatment (radiation, chemo, radioactive iodine, etc.), the emotional challenges of being away from your family and friends, being cooped up in the hospital, and the fear of not getting better.  Then there is the realization of all that you have missed out on because you have been busy fighting cancer rather than enjoying your life.  The fight against cancer, especially childhood cancer, is intense.  Lukas was diagnosed with infant ALL (Acute Lymphoblastic Leukemia), which is super uncommon.  In fact, only 150 infants get it a year!  Because it is so uncommon, and because babies don't typically respond as well to treatment, they attack the cancer hard & fast.  His treatment occurs over two years and in those two years countless days are spent in and out of the hospital.  Cancer is especially challenging when it’s in kids, because they are growing and developing so much. Therefore, high-dose chemo can have a more detrimental impact on their bodies' development. This can have long-term side effects. Add to all that the reality that they are missing out on so much of their childhood.  

 

SAMIMAY:  On your blog, you share a spiritual journey. What is one of the most encouraging lessons you’ve learnt in the last few months?

AlizaI have learned that, even when life is super hard and seems hopeless, joy can be found. A passage from Scripture that I was constantly reminded of, when Lukas was first diagnosed, was James 1:2-3, which says, "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance." I also have learned that in the midst of sorrow and fear the Lord can draw you near and carry your burdens.  I have been reminded that we can see Jesus through the love and generosity of others.  I have been reminded that this world is temporary, but through faith in Jesus, eternal salvation can be found. It would be easy for me to constantly wonder why this is happening to me, and don't get me wrong, I have wondered that.  But regardless of those haunting questions, I know that I serve a just God who loves me and Lukas, and whatever the outcome I will continue to have joy.

We thank Aliza for leading by example and inspiring so many through showing so much strength and compassion in this challenging situation.

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Thank YOU for reading!  Thank you for considering making a donation!  Through October 15th, SAMIMAY will donate 50% of all online revenue to Aliza’s fund.  

We humbly ask everyone for prayers for Lukas, Aliza, their whole family, and team of doctors and nurses that work with them.

 

To learn more about childhood cancer in the US and other inspiriting stories, please see the below links:

http://www.huffingtonpost.com/jacqueline-dooley/childhood-cancer-dont-loo_b_8067188.html

 http://www.upworthy.com/one-mom-asked-for-donations-to-fight-childhood-cancer-20-years-later-95-million-and-counting?c=ufb1

 

Thank you,

SAMIMAY Team