Celebrating the Contributions of Women who are Making an Impact in the Special Needs Community Volume 1, Issue 2 Spring 2014
Father’s Day Issue
How To Overcome Isolation When Working From Home Sending Your Kids with Allergies To Summer Camp
What is Music Therapy? Be sure to follow us!
SpecialMompreneurs.com
In This Issue Paul Murasko Julie Cole of Mabel’s Labels
Ellen Stumbo of Finding Beauty in Brokenness Julie Bombacino of Real Food Blends Katrina Moody Gary Dietz of Dads of Disability
Isabella Yosuico of Mighty Tykes
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Melanie Merritt of Joyful Blessings
Articles
EVERY ISSUE
}
Spring 2014
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11 14 29 31
Interviews
20 23 40
Hot Dogs Are Not a Neutral Food
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What is Music Therapy?
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The Power of Yet
From Down Syndrome to Cerebral Palsy: An Adoption Story Eye to Eye - Soul to Soul
How to Overcome Isolation When Working From Home Rethinking Dyslexia
Letter of Intent Offers Peace of Mind
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27 34 38 49 51
Advocate’s Corner: Pursuing Prader-Willi Syndrome
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Business Briefcase: Why It’s Important to Study Your Competition
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Book Review: Where Do Belly Buttons Come From?
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Book Recommendations 53
A Note From the Editor Editor, CEO Marla Murasko
SpecialMompreneurs.com
Design & Layout Melinda Martin
TheHelpyHelper.com
Contributors Ali Shenk Ryan Judd Ellen Stumbo Lauren Kossack Cindy Cohen Lateefah Wielenga Mable Fox Cover Photo 5 Boys + 1 Girl = 6 Photography by Katie Driscoll
5boysand1girlmake6photography.com
Stock Photography DepositPhotos.com If you would like to be featured in or be a contributing writer for our next issue, please contact Marla Murasko at
specialmompreneurs@gmail.com
Volume 1, Issue 2 Spring 2014
Welcome to SpecialMoms! I want to share a wonderful moment with you. It was a beautiful spring day. The windows were open and I heard the birds chirping. It’s almost like life was standing still. That day I had the pleasure of babysitting the child of my son’s previous caregiver. It brought back memories of warm cuddles, dribble, innocent smiles and a time when life was a lot slower. I relished in the moment of just kicking back and relaxing. It was magical. It made me think about how fast paced our lives have become, that when we have the time to really slow down and enjoy life we really need to jump at the opportunity. That is exactly why I want to say thank you for taking the time to opt-in, download, and read my magazine. I love being able to share with you these wonderful, powerful stories of hope, determination, and love for a child. All of the amazing people that I interviewed for this issue bring some unique perspective to being a parent of a child with special needs. Whether it’s running their own business, blogging, or writing a book. Every one of them have something in common--they are a typical parent dealing with extraordinary circumstances. Let me share part of the interview I did with Isabella Yosiuco, Founder of MightyTykes: “I truly believe we are different by design, and philosophically, I think of Isaac as an individual rather than a diagnosis; as a friend once said, it’s just a different way of being. Having said that, Isaac has a unique world-view, relishing life in a way I can’t articulate but that moves me to slow down and savor more.” But slowing down doesn’t have to mean standing still. Slowing down doesn’t mean you can’t live your life and have your own dreams. It just mean that you need to reinvent yourself.
xo,
Marla Murasko
Paul Murasko
Tell us about yourself and your family.
there was a potential for Down Syndrome but agreed against the amniocentesis. We knew the test result would not have changed our decision and was not worth the risks involved. When Jacob was born, the nurse indicated his Apgar tests were low and that they thought he had Down syndrome. They drew blood and sent it to the Mayo Clinic for testing. A few days later, it was confirmed he had Trisomy 21, which is better known as Down Syndrome.
I am a husband, married to my best friend and loving wife, Marla. I am a father of two awesome children: Amanda is 19 and a freshman in college and Jacob is 8 and is currently in first grade. I was born and raised on the east coast but have primarily lived in the Midwest the past 20 years. I work for Johnson & Johnson and have been there for over 25+ years. I am very active in my community through being a member on several organization boards, as well as being a coach for my son’s basketball team. Besides spending time with the family, I enjoy golf and reading in my spare time, as well as taking family vacations and
What were your first thoughts when you heard of your child’s diagnosis?
having that occasional “date” night with my wife.
How did you find out about your child’s diagnosis? We initially found that our child would be born with a “hole in his heart” when my wife was early in her second trimester. At that point, we knew
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To be honest it was a shock and one that I had to get a handle on. I am the type of person who likes a plan, likes understanding the situation and having the answers. However this was not possible when the diagnosis was confirmed. I found myself in unfamiliar territory; I needed to think and talk it through. So I went to the hospital chapel to sit and pray. I then had multiple conversations with my wife and family, quickly realizing that this is going to be a time
Paul Murasko that I don’t have all the answers and may never will. Nonetheless, Jacob is a blessing and as my mom always said, “God does not give you anything you can’t handle.”
a career. Did having a child with special needs change those dreams? And if so how?
How did having a child with special needs change you as a father?
No, it hasn’t. My hope is to provide Jacob every opportunity possible to participate, learn, and grow. They are no different than the dreams I had for my daughter Amanda when she was his age. Every child is different in his/her own way, and having a special needs son is no different. Jacob
“
currently participates in Upwards basketball, is in a general education classroom setting, and, in many ways, is no different than other 8 year old boys--cute, mischievous, and manipulating in his own way. I can’t wait to see what the future brings.
and I hope others agree that I am an overall better person because of Jacob. One of Jacob’s gifts to everyone he comes in contact with is that he will make you a better person if you open your heart, accept him for who he is, and learn from him. He continues to give of himself and helps everyone to understand and appreciate unconditional love.
As a father, you have certain dreams for your child, whether it be playing a sport, going to college or having
Know your and your child’s rights, and remember if you don’t advocate for your child , no one will .
“
I believe having Jacob has made me a better father. I feel I have grown in so many areas and now look at things from a different lens. I feel
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What do you want to share with other parents about how you advocate for your child whether it be in the school, with insurance companies or just in your own community?
Paul Murasko I am blessed to have a wife whose passion is to educate and advocate for Jacob and those with special needs. It seems like I am learning something new almost every day. The best advice I can give is to make sure you are actively involved in your child’s education. Don’t expect everything to go smoothly. Know your and your child’s rights, and remember if you don’t advocate for your child, no one will. I would also strongly encourage everyone to understand your health plan. Coverage for therapies in particular can be very complicated and costly.
my first eight years of being Jacob’s dad is any indication, I can tell you I am in for an incredible ride and a journey of a lifetime!
As the breadwinner for your family, how have you planned for the future of your child with special needs? We have created a special needs trust to ensure Jacob is taken care of when we are not there to help. I would encourage all parents of special needs children to begin having that conversation with their lawyer and financial advisor to ensure things are in order…because, as you know, you won’t always be there for your child.
What advice can you give to other fathers of special needs children? Remember you are not alone out there. Don’t be afraid to ask for help, seek others who might be able to provide support and always be active and involved in your child’s activities. Being a father is one of the biggest responsibilities a man can have. No one should shy away from it. You will get much more back than you will ever give. If
What goals or dreams do you see in the future for your child? Being involved in school and extracurricular activities, going to college, possibly ClemsonLIFE and being as independent as he can when he reaches adulthood. •
Jacob’s Journal – My Journey Home When I first learned of my son’s diagnosis when I was four months pregnant, I knew that I wanted to document everything. Being a first-time mom and knowing that there was going to be a lot of medical information told to us, I decided I wanted to keep a journal. So I kept a journal, documenting all the different procedures, medicines and day-by-day events that lead up to my son’s first surgery at 16 days old. After we got home and a whole new routine of therapies and doctor visits took place I still kept my journal, well as best I could. So I decided I wanted to write a book to share our story with other parents who were given the news that their child will have a disability. This story is unique in the way I wrote it, since I chose to write it as if my son was telling the story. This story will take you on an incredible faith-filled journey as a family enters the world of having a child with special needs.
Available on Amazon
for $16.95
The book is available on Amazon for $16.95 You may purchase this book through Amazon by clicking My Book
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Hot Dogs Are Not a Neutral Food Hot Dogs are Not a Neutral Food Foods either Support Good Health or contribute to sickness for your kids >>>Cindy Cohen
W
Back in 2009, BMC Cancer found “children who consume cured meats, like hotdogs and bacon, were 74% more likely to develop leukemia. It’s believed nitrites, which build up in cured and smoked meats, amplify cancer-risk.”
hen my kids were little, I used to think there were some foods I could classify as neutral. You know--foods that are not that good but not really that bad for you either. For example, hotdogs. Everyone knows hotdogs are not on the healthy food list, but are they really that unhealthy?
The American Academy of Pediatrics (AAP) has a thing or two to say about hotdogs, too. They recommend hotdogs come with a warning label related to the choking hazards--not because of their nutritional risks. Do you find it is as strange as I do that the AAP is more concerned with dying from choking than they are from dying from cancer? Just checking.
The truth is , as much as we would like to think differently, foods are either healthy or unhealthy. There are no neutral foods. Let’s take a look at those hotdogs for a minute. On July 3, 2012, the Daily News reported that the 20-member panel of the Washington, D.C. based Physicians Committee for Responsible Medicine (PCRM) made a powerful statement.
That’s the short list of hotdog health hazards. A quick internet search will fill you in with dozens more. In my mind and I’m sure yours, too, this certainly moves hotdogs from the neutral list right over to the top of the super-unhealthynever-to -pass-my-kids-lips-again list.But wait a minute.... What about all those kid-friendly, yummy advertisements you see about healthy hotdogs?
“We want to let people know that processed meats have been closely linked to colorectal cancer,” said PCRM’s Dr. Ulka Agarwal. In fact, PCRM thinks hotdogs are so unhealthy that they compare them to the same health danger as smoking cigarettes. You wouldn’t think of giving your 2 year old a cigarette, so maybe you should reconsider that hotdog.Oh, wait. There’s more.
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Food manufactures have discovered that if they put “healthy” advertising on the package that you will be so mesmerized that you will not notice what is in the package.
Hot Dogs Are Not a Neutral Food It’s a trick. Don’t fall for it. They are just that-advertisements.
My kids are not little anymore, and they’re
And what are those advertising companies up to? They are paid to sell their product, to convince you to buy them, whether they are good or bad for you. Did you see a while back in Health Magazine where they ran a story on the “Worst and Best Hot Dogs” and discussed how to pick a healthy hot dog. Really? In this case, they’re selling the magazine and the hotdogs. You won’t be hearing about cancer and choking. After all, what could be great about that?
making those decisions for them now. When I
If this is what’s going on with hotdogs, it makes me wonder what’s going on with the other foods. I’m thinking maybe you are, too. It’s not that I’m crazy about hotdogs. What I’m crazy about is the misconception we share about food and how healthy the food is or is not for us. Hotdogs are just an example. There are many foods we think are neutral, safe or not that bad to eat. Really? Neutral foods? No.
If you think a food is neutral, then put it back; it’s
making food decisions for their families. I’m not was making them, I wish I knew what I know today.
My kids now know and are making
healthier choice for their children. Now you know, too. As you make food choices for your family, be sure to remember there really are no “neutral foods”.
most likely not only unhealthy, it could kill you over time. •
*The Juice Plus+ Children’s Health Study is enrolling now for ages 4 – 18. If you would like to know more about it, contact the local representative.
Cindy Cohen Cindy Cohen is a registered nurse with 35 years of experience from the bedside to CEO of a hospital. Cohen is recognized as an accomplished author, wellness expert, and corporate wellness leader. As a health coach and wellness consultant, Cohen is the guiding force behind the C2 Your Health team in helping others find their way to improved personal and business wellness. Cohen has written a number of books, and you can find Cindy at CindyCohenRN.com.
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The Power of Yet
The Power of
YET
>>>>Lara Molettiere
S
o there’s this moment when your heart skips a beat and you literally can’t breathe when you are told your child is not “perfect”. Receiving a diagnosis, even when you know there is an issue is hard because now this “Challenge” has a name. Your wonderful, amazing, blessing from above is not what you were expecting. That picture you had in your head of your child and their life is suddenly shattered. The bicycle riding, the incredible sweet bedtime conversations with your 2 year old, the birthday parties, the carefree days and typical milestone expectations. Gone, just like that. The real beauty of the special needs community is that no matter what your child’s needs may be or how severe they are, we all know that any “diagnosis” causes the parent grief. Because it’s medical.
We can’t change it, we can’t “fix” it, we can’t take it away and give that perfect picture back to our child or to our self. facebook
We understand that it causes pain and anger and frustration. Be it Autism, Down Syndrome, Celiac, Apraxia, Diabetes, CP, APD or whatever set of initials, it means things must change. Diet, therapy appointments, doctor visits, learning an alternate form of communication, finding a support group for them and for you, and dealing with a “new” normal for your family. It causes stressed emotions and relationships and it is downright lonely. Especially at first.
After you go through the stages of grief and begin to settle in, you slowly begin to understand the power of yet.
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A conjunction that holds the future. Yet is defined “But at the same time; but nevertheless”. My child can’t walk yet. My child can’t speak yet. My child can’t sit still yet. My child can’t do a jumping jack yet. Yet gives our children a freedom to keep reaching for goal after goal after goal. It gives us, the parents, freedom from self-imposed guilt, from the comparison trap, and a limitless supply of hope. Helen Keller is a wonderful example of what yet can do. Her parents didn’t give up, they believed she just hadn’t found the right help yet. Then they found Anne Sullivan. If it weren’t for yet, we would not know who Helen Keller was.
The Power of Yet Yet is a big deal and it is a word we should all use more! In our journey, I have found yet to show up alongside grace (unmerited favor, or in plain speak a whole lotta forgiveness, understanding and patience)more often than not. Mr. T cannot manage zippers yet. Grace allows me to keep my cool when he insists on doing it himself anyway. Strangers cannot understand 80% of what my child with Apraxia says yet. Grace allows me to show kindness and sometimes mercy when I have to explain his challenges and why he sometimes does what he does. All the yet’s we have already conquered give me so much hope. All that hope allows me to show grace. And that grace allows others to see that God can work
My My
child
child
can’t
can’t
walk
speak
My child can’t sit still
amazing miracles in the most prodigal of us. And He can do it through our precious little ones, I think He often does. Special needs or not. “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete not lacking in anything.” James 1:2-4. God isn’t finished with me yet. I am learning how important perseverance really is for my child with special needs and for myself. Let Yet be your call to hope as you take this amazing journey of parenting a child with special needs. •
YET. Lara Molettiere
I’m Lara, a sinner saved by grace, wife and help-meet to my best friend, John, and homeschooling mama to two bouncing (literally) boys, Teddy and Frederick. Hot tea, good conversations and dark chocolate are some of my favorite things. Grab your favorite mug and join us on our adventures at Lara’s Place and a Cup of Grace!
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Julie Cole Julie Cole of Mabel’s Labels
Labels for the stuff kids lose!
household items | safety labels | clothing | bags | shoes | write-on | peel and stick
Tell us about your business. I started Mabel’s Labels 11 years ago with three friends. We created durable dishwasher and microwave safe labels for all the stuff kids lose! We started the business for two reasons – we had a great product idea and my son had just been diagnosed with autism. I knew I wanted to leave the traditional work force in order to run an intensive ABA therapy program for my son. Launching the business and my son at the very same time was busy and exciting. We’ve never looked back. I have shared my journey as an autism mom, entrepreneurial mom and mom of many through blogging since 2007.
How old is your business? We launched in 2003 and just celebrated 11 glorious years of Label making!
Tell us a little about yourself. Well, here is my official bio – but mostly I’m just trying to get through my days holding onto a bit of sanity along the way:
Julie is the mother of six and a co-founding VP of Mabel’s Labels, the leading provider of labels for the stuff kids lose! Mabel’s Labels has grown from basement start-up into an award winning, celebrity endorsed and international phenomenon. As company spokeswoman, Julie is well-known amongst North American mom entrepreneurs and her dynamic personality has led to numerous speaking engagements, from university business classes to TV appearances, including Canada AM, Breakfast Television, The Marilyn Denis Show, Metro Morning, CH Morning Live, Better TV, The Mom Show, Fox 5 San Diego and WGN’s Midday. She is a syndicated blogger for The Huffington Post, modernmom. com, PTPA Media, Yummy Mummy Club, and her company’s Mabelhood blog. Her writing has also appeared in Chicken Soup For the Soul Power Moms and numerous websites. Mabel’s Labels has been featured everywhere from The View to Forbes.com, and was listed on Inc.com’s 20 Awesome Facebook Fan Pages and Hubspot’s The 15 Best Facebook Pages You’ve Ever Seen.
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Julie Cole of Mabel’s Labels Tell us about your family. I have six children between the ages of 5 and 14. My eldest child is my son with autism. After he was born, I was quick to have three girls, which ended up being the best thing for him. His little sisters taught him a lot about being social! My last two children are busy little boys. It’s a fun and busy family. My eldest son plays ice hockey, is about to get his Black Belt in taekwondo. All my kids are into sports and music so I spend a lot of time carpooling!
Share with us the diagnosis of your child with special needs. How did you find out? My eldest child was diagnosed with autism when he was three-years-old. We were seeing some behaviors that concerned us and his language was late to develop. The rest of the children are neuro-typical, but I feel like what I learned raising my son has helped me to do a better job of raising all of them.
What is the most rewarding thing about being the mother of a child with special needs? Every success, milestone, achievement is exciting but times 100! When my other kids learned new skills, I was happy, but with my son – I would practically throw a ticker tape parade! I feel like on my death bed, I will say he is my life’s greatest achievement.
What advice can you offer to other mothers who are looking to start a business or charity? I think that it’s important to understand the impact it will have on your family. I would make sure that your husband/partner is supportive of your initiative. Without family support, it will be very difficult to fulfill this dream.
What was the biggest struggle you encountered when starting your business?
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I don’t get a whole lot of sleep and there are no trips to the spa for this mama, but I’m OK with that.
“
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Julie Cole of Mabel’s Labels
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Entrepreneurs face many struggles: funding, financing, product development, marketing – there are so many hurdles! For us, we were bringing a product to market that basically didn’t exist. Therefore, we had to come up with a great marketing plan that would let the market know that they needed us. The good news is, once we got our product out there, it was just a product that made SO much sense to families.
Tell us what a typical day looks like in your life. There is no typical day! With the kids now all in school: Kindergarten, Grades 2, 3, 6, 7, 8, I get them out the door at 7:45am. My work day can be done from home sometimes, many days I’m at the office in meetings and at other times I’m speaking or conducting interviews. It’s a busy life, but I wouldn’t trade it for anything.
How do you balance work and family life? I use a lot of strategies around my own productivity. I use technology to help me stay organized and connected to the office when I’m
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It ’s a busy life , but I wouldn’t trade it for anything.
home, and home when I’m at the office. I feel like I do a decent job of balancing, and if something feels like it’s off balance, I quite simply make a change!I don’t get a whole lot of sleep and there are no trips to the spa for this mama, but I’m OK with that. Plenty of time for that stuff later.
Do you have any awards that you want to share? I’m very proud of the many business awards we’ve won at Mabel’s Labels. I was recently awarded the MomFirst award at the Marketing to Moms conference.
What motivates you? I have many motivators – my kids, my business partners, my staff and my ambition!
What do you see in the future for your business? I look forward to a bright future for Mabel’s Labels! We have plans to roll out new products to new markets and expand our retail presence. •
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Ellen Stumbo of Finding Beauty in Brokenness Tell us a little about yourself. Ellen Stumbo is a wife and mom. She writes and speaks about finding beauty in brokenness with gritty honesty and openness. She’s passionate about sharing the real – sometimes beautiful and sometimes ugly – aspects of faith, parenting, special needs, and adoption. Ellen’s writing has appeared on Focus on the Family, LifeWay, MomSense, Not Alone, Mamapedia, and the Huffington Post.
Tell us about your family. I am an avid reader, and love reading with my kids too. I have three girls, ages 6, 8, and soon to be 9!
Share with us the diagnosis of your child with special needs. How did you find out? My youngest daughter was born with Down syndrome. We knew from our scans that she had
several markers for Down syndrome, so we knew it was a strong possibility. We chose not to have an amnio due to the risks. When she was born, her diagnosis was confirmed. She changed us, and so we decided to adopt another child with special needs. We adopted our middle daughter 4 years ago. She has cerebral palsy among some other diagnoses.
What is the most rewarding thing about being the mother of a special needs child? I consider it a privilege to parent my kids-- all three of them. As a special needs parent, I feel like, thanks to my children, I have a better sense of what really matters in life, of what it means to be loved not for what we can or cannot do, but simply because we are. Every life has meaning, and every life has purpose.
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Ellen Stumbo of Finding Beauty in Brokenness Briefly explain to us about your business and why you decided to it? I began to write because I wanted to share my story. I struggled with my daughter’s diagnosis of Down syndrome and wondered if anyone had ever felt the same. Stories are powerful. They connect us; they let us know we are not alone.
Tell us what a typical day looks like in your household. It is crazy! Actually, our life looks a lot like most other families. Our biggest struggles come with mobility and accessibility outside in the community.
How do you balance work and family life? I am a writer, and I also teach Zumba. The biggest thing is being a good steward of my time...it’s hard!
“Someone I loved once gave me a box full of darkness. It took me years to understand that this, too, was a gift.”
What motivates you? My husband, my kids, and the many stories that come in my inbox of people sharing their stories. It is an honor to be allowed into their lives.
Is there a charity or organization you volunteer for and/or support and why? I was involved with the IDSC (International Down Syndrome Coalition)doing the Communications piece. Now I help them in a smaller capacity as time allows, mainly doing articles for them.
What do you see in the future for your business? My husband and I dream of helping churches welcome families impacted by disability. He is a pastor, and we often hear stories form people about their experiences at church, so know that the church needs to become more inclusive and welcoming.•
--Mary Oliver facebook
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What is Music Therapy?
What is Music Therapy? >>>>Ryan Judd
A
fter 14 years of practicing music therapy with children with special needs, I still have moments where I step back and say, “Wow, this is powerful stuff!” I feel so fortunate to work with these kids and to see them learn, grow and develop through our time together. Many of you may be wondering what music therapy is and how it benefits children with special needs, so let’s take a look. Music Therapy is a research-based health care profession that uses music to help clients reach their therapeutic goals. Ok, that sounds interesting, but what exactly does that mean? Let’s break it down.
Research-based points to the fact that the techniques and methods that music therapists use are based on research that is being done at many universities, hospitals and institutions throughout the world.
Uses music to help clients reach their therapeutic goals
Health care profession
means that music therapists help clients work on goals that might typically be found on an Individualized Education Plan (IEP). For example, a music therapist working with a child with Down syndrome might address a speech goal of improved articulation.
means that music therapy is a field that is based on rehabilitative and medical models. It is akin to such fields as physical therapy, speech therapy, or occupational therapy.
One important point to make about music therapy is that the focus is on non-musical goals. Sure, we use instruments and music to address these goals, but it is not our primary aim to teach clients how to play an instrument or learn how to read music. It is all about using music to help children learn and improve developmental skills such as motor or speech/communication skills. Now that we have a better idea of what music therapy is, let’s take a look at some of the benefits. Music therapists who work with children with special needs address developmental goals in the following areas:
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The Benefits of Music Therapy
Social-Emotional
Social skill development
Behavioral
Music therapists write personalized songs to teach a child how to identify feelings and how to use coping strategies when they feel overwhelmed. Social stories put to music are also an effective way to address these goals.
During individual sessions and music therapy groups, children practice greetings, turn taking, eye contact, requesting, self-expression, collaboration, etc. through musical activities. For example, a music therapist might lead a turn-taking song that involves each child taking a turn with a special instrument and then handing it to another child.
Captivating music is used to help a child sustain attention to an activity. Musical social stories can be used to address inappropriate behaviors and to teach a child positive alternatives.
Speech and communication A music therapist will write personalized songs to sing with a client. These fun and motivating songs isolate speech sounds and have lots of repetition built into them, i.e. “Big Bear Takes a Bubble Bath.” Musical activities and instruments are used to motivate the use of verbal language, i.e. “I want the drum.” Augmentative and alternative communication methods and devices can be used to improve non-verbal communication, i.e. using sign language or a communication app to make choices between songs and instruments.
Academic
Fine and gross motor
Self-care skills
Academic information can be put into a song format so that recall is improved. A classic example of this is the “ABC” song.
Percussive instruments, like maracas and shakers, are used to practice fine and gross motor skills. Movement-based musical activities are used to motivate a child to practice sitting up, crawling, walking, jumping, etc.
Personalized songs and musical stories are used to help a child remember the sequence of skills such as dressing or toilet training.
“It is all about using music to help children learn and improve developmental skills such as motor or speech/ communication skills.” SpecialMoms Parenting Magazine, Spring 2014
by Ryan Judd of TheRhythmTree.com
What is Music Therapy? Music therapy effectively addresses these goals through evidence-based interventions, but it also goes a step further. Music therapy builds up a child’s self-esteem, feeds their spirit, and gives them an outlet for expression. We always strive to make sessions so fun and musical, that our clients don’t realize how hard they are working. Now that’s a recipe for success! If you are interested in learning more about music therapy, please visit my website at The Rhythm Tree. I have a wealth of articles, infographics and client videos that will show you what music therapy is all about. While you are there, please sign up for my free newsletter. This newsletter is where I share exclusive videos, songs, and resources so that you can use music with your child even if you don’t have a musical bone in your body! On my website you can also check out my DVD and Music Kit for Special Needs and my CD for insomnia and relaxation. •
Music therapy builds up a child’s self-esteem, feeds their spirit, and gives them an outlet for expression.
Ryan Judd Ryan Judd is a board certified music therapist with a master’s degree in Music Therapy. He has been specializing in children with special needs for more than 14 years. Ryan is also the founder of The Rhythm Tree, which is a website dedicated to educating parents on how to use music to help their children. He has also developed an award-winning DVD and Music Kit for children with special needs. You can find him at TheRhythmTree.com.
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Gary Dietz of Dads of Disability
blog.dadsofdisability.com Tell us a little about yourself and your book. I am foremost a father to Alexander, a wonderful 14 year-old boy with multiple disabilities who just two years ago entered a residential school placement (he is home on weekends), I work in marketing and am the editor of a very inspiring book entitled “Dads of Disability”. The book is available in paperback on Amazon (and by special order at bookstores), and also an ebook on Kindle, iPad/iPhone/iTunes, Nook, and Kobo. The book is a collection of stories and poems rich in specific context and imagery that illustrate a father’s perception of and reaction to a variety of experiences. From before and through birth, to diagnosis, to the workplace, to serious medical or behavioral issues, to father’s support circles, and much more—including aging and death— many inflection points are explored by fathers and mothers and children. Each entry focuses on male and fatherhood themes.
Tell us about your family. My lovely significant other and her two young children live with me, and on weekends we try our best to integrate all three children and meet their individual needs. I am so busy with my work, advocating for my son, and trying to be a good partner that my hobby list has shortened to morning walks and Netflix!
How did you find out about your child’s diagnosis? Our “day of diagnosis” was complex. But in a nutshell we knew their were issues from birth, and had an official diagnosis at 9 months. One of my pet peeves is that too many folks (professionals and laypeople alike) don’t know the difference between diagnosis and prognosis. A diagnosis can only inform a prognosis, not dictate what someone’s future will be.
What were your first thoughts when you heard of your child’s diagnosis?
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Gary Dietz of Dads of Disability Again, these are quite complex. Rather than share my child’s specific details and my emotions around diagnosis (or details of that of other fathers in my collection), I approach this question with broader stories of emotions and reactions. But, the specific initial thoughts I had when I first heard my son’s diagnosis were typical – tears and depression.
special needs change those dreams? And if so how? This is a deep, book-length question! A short summary will appear trite and stereotypical. But my dreams are still the same, for my son to live up to the greatest potential his capabilities allow, and to be happy and safe.
“[I want my son to] be happy and healthy in a living arrangement that is sustainable , safe , and makes him happy.” How did having a child with special needs change you as a father? A better question would be how didn’t it change me. Every action, every job, every emotion, every interaction I have with friends, family, and strangers – and my ability to advocate at many levels for things I believe in – was touched in some way. And it drove me to move my writing into the commercial arena in a way I had never done before.
As a father you have certain dreams for your child, whether it be playing a sport, going to college or having a career. Did having a child with
What do you want to share with other parents about how you advocate for your child whether it be in the school, with insurance companies or just in your own community? Another book-length question! But to summarize: (1) Be patient, firm, and informed (2) Learn how to speak in public (3) Learn when not to speak in public (4) Learn how to organize paperwork and write effective letters (5) Learn how to keep yourself calm when explaining the same thing for the 3rd, or 10th, or 50th time, and most importantly (6) Be patient, firm, and informed! Oh, and (7) Be patient, firm, and informed!
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Gary Dietz of Dads of Disability What advice can you give to other fathers of special needs children? Read my book. It isn’t my story. It is the story of over 30 other dads and moms and you’ll learn a lot. Whether your child is young or your child is an adult.
Tell us about the book “Dads Of A Disability” and why you published it? When my son needed to enter a residential placement, a large hole was torn in our lives in many ways. And, rather than allowing a depression to set in, I decided to reach out to what turned out to be hundreds of people over the next 18 months to listen, learn, edit, and share their stories. The genesis of the book was my marketing background. There were a lot of “single-family, single-diagnosis, novel-length” books by fathers. Yet, there were essentially no collections of essays on the topic written and edited by a father. Why was this? Was there because there was no demand? Or was it simply because nobody had undertaken this effort? Fast forward past research with genetic counselors, working with a high-school student
on a project animation, a failed Kickstarter and a successful Indiegogo campaign, and over a year of “opportunity cost” and under-employment to focus on the project, and on April 15, 2014, the project was born! I take pride in early reviews and in the fact that this book is meeting the goal I set for it: Starting discussions between men and women, helping caregivers understand father’s perspectives, and showing men their thoughts and emotions on these topics – no matter how hard – are not uncommon.
Are there any more books on the horizon to be published? Yes. But first, I need to re-charge my bank account by getting some focus back to my “day” job, that is unless Ellen or Oprah features my book. But even then, in case you didn’t know, people who write books to get rich are only a few steps shy of a lottery dream. This book was born of passion, and the next one will be, too. (But you should still buy it! I want to at least break even!) Continued on page 48....
“A diagnosis can only inform a prognosis, not dictate what someone’s future will be .” facebook
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Isabella Yosuico
Isabella Yosuico of Mighty Tykes
Tell us a little about your business?
It was founded in 2011 but got state economic start-up development funding March 2014.
MightyTykes sells great gear for special kids. Our flagship product is MightyTykes™ Infant & Child Weights. Inspired by the birth of my son, Isaac, who has Down Syndrome, I developed the weights with the input of physical and occupational therapists, including a few from the “U.S. News & World Reports Top Children’s Hospitals” list, which participated in a limited trial just over a year ago. Parents and therapists have found that the MightyTykes™ weights may help with a variety of conditions including onesided weakness, hypotonia, sensory issues, toewalking, and many others.
Tell us a little about yourself.
How old is your business?
Immediately before launching MightyTykes, I was a professional freelance writer specializing in health and wellness topics for clients including MedImmune/AstraZeneca, Bon Secours Health Systems and Care.com. Prior to shifting to an exclusively writing focus after the birth of my son Pierce, I worked in corporate communications and marketing, holding management positions with everything from a Fortune 1000 companies to small non-profits.
A longtime communications and marketing professional, I became a mompreneur after my son Isaac was born with Down syndrome. I originally made a little set of weights to help treat Isaac’s hyptonia (muscle weakness and low tone), soon learning from his PT that the weights could benefit many other kids including those affected by prematurity, Cerebral Palsy, Infant Stroke, Autism and other conditions, as well as typically-developing kids. So began our journey.
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Isabella Yosuico of Mighty Tykes I’m near completion of an MS in Management (Public Relations focus) at the University of Maryland University College where I also earned a BA in Communications. Born in Calfornia and raised in Maryland, I currently live in arts colony Berkeley Springs,
terrific older brother to Isaac. Isaac just turned four. He’s also all boy, though he’s extremely musical, and loves to sing and dance. My stepson, Josh, is an outdoorsman and special needs teacher in Montana, and my stepdaughter, Megan, is a nurse in North Carolina and loves to
“When he loves, he loves with abandon and joy. I want more of all of that!” West Virginia with my husband Ray and children, Pierce (7) and Isaac (4). I also have two grown stepkids, Megan and Josh, and two step-grandkids, Hunter and Logan. I love running, reading, crafts, cooking, and travel.
Tell us about your family. My husband Ray is an addictions counselor for a D.C.-based charity S.O.M.E. Trained as artist at Brooklyn’s Pratt Institute, Ray still paints… one of the reasons me moved to this quaint arts town. My son Pierce is seven and is the consummate jock. High energy, bright and funny, he is a
shop. Our grandsons, Hunter (13) and Logan (9), are very active with sports and school. We’re in close contact.
Share with us the diagnosis of your child with special needs. How did you find out? Isaac has Trisomy 21, better known as Down syndrome. I learned he was likely to have some kind of genetic condition at my first 12-week prenatal check-up. Ray and I elected not to have further testing to confirm a diagnosis, so I actually found Isaac had Downs a few hours after he was born.
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Isabella Yosuico of Mighty Tykes What is the most rewarding thing about being the mother of a child with special needs?
What was the biggest struggle you encountered when starting your business/charity?
I truly believe we are different by design, and philosophically, I think of Isaac as an individual rather than a diagnosis; as a friend once said, it’s just a different way of being. Having said that, Isaac has a unique world-view, relishing life in a way I can’t articulate but that moves me to slow down and savor more. Above all, it’s that extraLOVE chromosome 21 which stands out as his most precious quality. When he loves, he loves with abandon and joy. I want more of all of that!
There were many, many challenges along the way, but an unseen hand always seemed to provide encouragement or solutions at a critical moment. I’ve got lots of stories of obstacles overcome in seemingly miraculous fashion.
Is there a charity or non-profit organization that you support, work for, or are the founder of that you would like to share? MightyTykes loves supporting causes we believe in, so through our MightyLOVE campaign we are giving to various organizations as a practice. Our first effort is giving free sets of weights to all 22 Shriner’s Hospital for Children. Shriner’s provides free, high quality medical services to kids. We love that. Check it out on our website at mightytykes.com.
What advice can you offer to other mothers who are looking to start a business or charity? If God has planted a passion and purpose in your heart, stay the course. Don’t let yourself be distracted or discouraged by anyone or anything. Prayer helps. Lots of it.
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Human value is inherent and determined by God alone , not by abilities, attributes or achievements. God has a good purpose for every life .
Isabella Yosuico of Mighty Tykes Tell us what a typical day looks like in your household. We really believe in schedules and routines at our house. I’m extremely blessed that my amazing husband is very much an equal partner. We both wake up very early in the morning and get a lot of quality personal time in before the kids are even up. Then we work as a team to get the kids out the door. On days when both kids are in school/preschool, Ray takes Pierce and I take Isaac.
friendly means allowing my work and life to be more integrated in some ways, and in other ways to set very clear boundaries about my time. I’ve had meetings with Isaac on my lap because he’s home sick or have been on the phone with my employees’ children chattering in the background. I’m a recovering perfectionist, which really helps alleviates stress. I am also committed to punching out (practically and mentally ;-)) when I pick the kids up from school, and not working on the weekends—and extend the same privileges to others.
I am committed to punching out at 3pm when I leave to pick the boys up, then we do homework and play a while, followed by dinner together as a family. After dinner, we have some playtime, often outdoors, or TV time. Then it’s super-early to bed. Boys by 7-7:30, us parents by 8-8:30.
It’s a very mindful discipline, but it has really worked to honor that commitment to myself and others. Again, forget perfectionism!
How do you balance work and family life?
Over the years, I’ve won several awards for communications I helped develop, but honestly, they don’t seem very relevant anymore!
I’m very high energy and have historically been more of a “do-er.” I also have a busy family life and my mom’s in hospice in a nursing home. Many, many competing demands! Having worked at home for a long time, I know how difficult it can be to maintain work-life balance, especially as a Type A personality.
What motivates you?
As any parent can testify, kids help us prioritize balance and family life—if we let them. This is especially true of Isaac because of his more relaxed temperament. He and Pierce have both helped me set increasingly aggressive standards to improve our shared quality of life by slowing down and being more fully present to everyday life.
I’m very hopeful that the weights will help a lot of kids worldwide. I’m also excited to explore launching some other products we have in mind.
Partly as a result of having Isaac, one of my corporate values is to be family friendly. Family
Do you have any awards or recognitions you want to share?
A greater purpose--God.
What do you see in the future for your business or charity?
More than anything, though, I think I’m most excited by the prospect of advancing a message: We’re different by design. Human value is inherent and determined by God alone, not by abilities, attributes or achievements. God has a good purpose for every life. I also hope we’ll debunk a few myths in the process. •
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From
Down
Syndrome
From Down Syndrome to Cerebral Palsy: An Adoption Story
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would have never chosen to be the mother of a child with special needs. Nonetheless, our second daughter, Nichole, surprised us with an extra chromosome and a diagnosis of Down syndrome. Dealing with her diagnosis was extremely difficult. All of sudden I had become the mother of a child I was not prepared or ready to parent. Yet, something significant took place during those first few months. I began to connect with other moms that had children with Down syndrome. These moms offered me courage, they gave me hope, they allowed me to dream big for my child. Nichole’s diagnosis of Down syndrome became a part of who she was and not what defined her. As we navigated the new world of special needs, we learned of the fate of children with disabilities in other countries. It broke our hearts to know these children were not valued in their cultures, and they were sent to orphanages and then mental institutions at the young age of four or five years old. We could not imagine life without our Nichole, and she had already contributed so much to our family. Her life had great value, it had meaning, and it was hers! When we were ready to add another child to our family, we began to consider adoption. And not
to
>>>>Ellen Stumbo just any adoption, but the adoption of a child with Down syndrome from Eastern Europe. As we searched the many faces of beautiful kids with Down syndrome, it was the face a little girl with Cerebral Palsy that caught our eyes. Her diagnosis, however, scared me. I realized then how comfortable I was with Down syndrome, and how well it “fit” with our family. Cerebral Palsy, on the other hand, seemed daunting, difficult, maybe too much.
Yet, my husband believed in the potential of all children , regardless of ability. He believed that all children deserved a mom and dad that would believe in them, and that would stand with them and support them. After much prayer, we decided to be Nina’s “yes.” We would believe in her, we would give her the chance of a hope and a future; we would call her our very own. Nina has been with us for two and a half years. Her Cerebral Palsy has been a challenge at times, as has Nichole’s Down Syndrome. Nonetheless,
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From Down Syndrome to Cerebral Palsy we love this beautiful life we have together. Their special needs might make things more difficult at times, but overall, we have a pretty average and normal life. The girls love to do what little girls love to do.
Every day is a new adventure , and every day we have an opportunity to grow. We cannot imagine life with Nichole and without Down syndrome . We cannot imagine life without Nina and cerebral palsy. Most of Nina’s new life, with us, is a testament of all the things that would have been denied to her. We watch her rise up and conquer new things each day, even the things we were told “she would never do.” This little girl is a fighter, and nothing will come between her and her full potential. We work hard, we practice, and we love. Oh, how we love! •
Ellen Stumbo Ellen is a writer and writes about finding beauty in brokenness with gritty honesty and openness on her blog. She tackles issues about faith, parenting, special needs, adoption, and confessions related to these topics. What you find here is sometimes raw. But it’s real, because life is messy, and broken, and beautiful. On the other hand, she dreams of writing fiction and winning a Newberry medal. Hey, we all have dreams... You can find her at {Beauty in the Brokenness} EllenStumbo.com.
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Julie Bombacino of Real Food Blends
realfoodblends.com
you find out?
Tell us a little about your business. A line of shelf-stable, 100% real food meals for people on feeding tubes.
How old is your business. Almost 2 years
Tell us a little about yourself. I am first and foremost a mom to two fantastic kiddos and wife to a pretty fantastic husband! I worked in digital marketing for most of my career, taking some time off to have kids and then founded Real Food Blends.
Tell us about your family. Tony is my husband. Did I mention he’s fantastic? Luca is my 5-year-old daughter. She’s funny, sweet, sensitive and never fails to put a smile on my face. AJ is my inspiration. He’s my 3 year old son who is the smiliest, happiest, sweetest boy you could ever meet.
Share with us the diagnosis of your child(ren) with special needs, how did
AJ has a slew of Dx, none of which define him. He has partial Agenesis of the Corpus Callosum, epilepsy, GDD, cerebral palsy and autism. He’s been 100% tube-fed since his first seizure at 6 months of age.
What is the most rewarding thing about being the mother of a child with special needs? The inchstones (we don’t talk in milestones ‘round here) are so, so much sweeter. Every sip of water he willingly takes, every time he uses both hands, or when we first looked at my husband and said ‘dada’, just amazing. We never, ever take those things for granted anymore.
What advice can you offer to other mothers who are looking to start a business or charity? Trust your mommy gut. If you would use it, others probably would too. Mommy gut only goes so far though. You need to research the market, create a business plan (more for the
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Julie Bombacino of Real Food Blends exercise of doing it because very few people will ever read it!), and be prepared to hear “no” a lot!
What was the biggest struggle you encountered when starting your business? You would think that mixing up a bunch of food would be relatively simple but it’s not. I learned very quickly why people get PhD’s in food science! We worked for almost an entire year on taking the recipes from my kitchen to make shelf-stable meals for commercial use.
Tell us what a typical day looks like in your household? Chaos! We have various therapists and kids inand-out of the house all day. I’m lucky that I have great help with both children, and my office is nearby so I can be flexible.
“We worked for almost an entire year on taking the recipes from my kitchen to make shelf-stable meals for commercial use . “ Continued on page 48........
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Katrina Moody
katrinamoody.com
KatrinaMoody.com -- A Geeky Girl helping with WordPress Designs and Customizations, Graphic Design, WordPress Maintenance, and other geeky fun.
I think the biggest disservice a special needs parent can do to themselves is forget to BE themselves. Amidst the advocating and fighting, the triumphs and challenges - you have to carve out something you are passionate about - and then you have to pursue it.
How old is your business?
Tell us about your family.
About 3 years+ though I worked as a freelance writer before
My husband and three guys are unique and awesome. My husband, Jim, and I have been married for close to 16 years now, but together for well over 20 - we were high school sweethearts.
Tell us about your business.
Tell us a little about yourself. I am a passionate kind of lady - first about my marriage and family and then about advocacy and raising awareness for special needs and other global concerns. I turned my attention to building my own business up after I realized that would help me take care of my family. My business, like everything else in life, stems from my passions - I love to write, create, and geek out with WordPress and CSS and other stuff.
Our children, Bobby (15), Andy (13) and Logan (9) are amazing little guys: Bobby loves reading and playing with his LeapPad, has discovered singing and performing, and he adores the friends he has made through Special Olympics - his smile will completely melt your heart. Andy is an artist who loves to put his own comic
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Katrina Moody books together; he’s into zombies now, but loves most super heroes - and his helpful spirit will make you think he’s older than his years. Logan is my mischievous little guy - he’s discovering his words and in LOVE with most theme songs. His giggle will make your day and melt your heart, too.
Share with us the diagnosis of your children with special needs. How did you find out? My guys have a lot of diagnoses, but the most important is awesomeness - because it’s the one I gave them and it describes them best: They are all awesome and unique. But that awesomeness = a LOT of different diagnoses around here. My husband and three sons all share the same rare genetic disorder, called Axenfeld-Rieger Syndrome. Along with ARS they are all autistic as well. My guys have varying other diagnoses, some because of the ARS and others perhaps due to being preemies (Andy and Logan were 33 weekers) or maybe just because they needed to be that awesome. Each kid and their diagnoses: Bobby - ARS, Epilepsy, Autism, VI (Visual Impairment - he’s legally blind) Andy - ARS, Autism, Dyslexia, other LD Logan - ARS, Epilepsy, Autism, VI (also legally blind), Cerebral Palsy I know there are other diagnoses that have fallen by the wayside over the years and others I think are a bit of overkill - like ADHD.
What is the most rewarding thing about being the mother of a special needs child? You learn to appreciate the little things that are so easy to take for granted otherwise - a laugh, a smile, taking a step, saying “I Love You” … all things my guys have fought to be able to do.
Briefly explain to us about your business and why you decided to it? I run my own online business, providing WordPress designs, customizations, maintenance and tweaking, along with graphic design. I started out by writing freelance and still love to write. I think it’s imperative for special needs parents, for caregivers, to have something they can be passionate about which is outside of being just a caregiver. I do still hope to form “The Rarelink” - an organization that specifically helps parents of kids with rare disorders make connections and find/give support to one another. It’s my dream - so … someday.
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Katrina Moody What advice can you offer to other mothers who are looking to start a business?
What motivates you?
Research is your friend. It’s not enough to have a great idea, or even to be willing to work hard you have to know who your competition is and why you are different. The same is true whether you are involved in a NonProfit or a for-profit business.
Is there a charity or organization you volunteer for and/or support and why?
What was the biggest struggle you encountered when starting your business? I still struggle with finding the time and focus to accomplish everything I want to accomplish … being the primary caregiver to three awesome kids and my own husband mean that my priorities don’t always leave time for business. I still struggle to find the right balance, but find it becomes easier as time goes on.
Tell us what a typical day looks like in your household?
Taking care of my family, providing for my family, and pursuing something that is all my own.
I support Monkey Do - they work to support the children and families in Appalachia. I also support the Autism Society of Indiana as well as A.S.K. (About Special Kids) here in Indiana and have served as a parent mentor with ASK. And I am a RAKtivist (Random Acts of Kindness activist) because I think the world needs more kindness. I also support global awareness for women and children through the Social Moms for Social Good Team of 200 - of which I am a member.
What do you see in the future for your business? I intend to keep growing my business, that’s a given. But I would love to pursue The Rarelink Foundation eventually as well - since I feel drawn to help other families dealing with the diagnosis of a rare disorder. •
Typical? What’s that? warnerscornertoys.com
Seriously, though, no one day around here looks like another - I just work to get as much done in between family commitments as possible.
How do you balance work and family life? It’s an ongoing challenge and one I feel fortunate and blessed to work toward. I start with the assumption that nothing is more important than family (and faith) and then go on from there.
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Eye to Eye - Soul to Soul
Eye to Eye Soul to Soul >>>>Lateefah Wylienga
I
t’s interesting that when I was a child I connected the word love with the sweet cherub we all know as Cupid. I would look at the paintings in history books and contemplate the firmament of biblical times and imagine the chubby cherubs aplenty. And as soon as February would arrive, my imagination would run wild, envisioning little chubby cherubs, equipped with bow and arrows. If you were one of the lucky ones (or not so lucky) Cupid selected you to be the receiver of love. Ahh love … those were the days. That was then, and today I can honestly say a little part of me misses the idea of Cupid. Whimsical, innocent, sweet and uncomplicated love is what I believed was the nectar on the tip of Cupid’s arrow. Yet, understanding what the word love really connotes, I believe I can safely say that I received more than roses and romance when I did find love. Or shall I say when love found me? In every relationship most of us long to be close to our partner. We want the three C’s, connection, commitment, and caring. We want to know we have a partner who is on our side. When things get tough we want to know we are not, and will not be – alone. Although these are the ingredients
we want to be in the love potion, they can only remain and grow with our help. We are required to do things in a strong and loving coupledom. It takes effort, after all love is a verb. One of the most important things required is open communication. We must be honest about our feelings, our needs, our desires – and our fears. It is imperative we get in the habit of truth telling. Scholar, visionary and author Bell Hooks says, love consists of at least four components. She also states, “Commitment to truth telling lays the groundwork for the openness and honesty that is the heartbeat of love.” The only way we can strengthen that love and get to the three C’s, connection, commitment, and caring is if we allow true intimacy to exist in our relationship. If you think I’m talking about the physical aspect of intimacy I’ve got to “ding” you. I am talking about that which many of you are afraid to do. Many of you are afraid to permit your significant other to see you – honestly. Could the reason be you are afraid that if they see you, they may not like what they see? Perhaps you believe they may judge you, ridicule you, or make fun of your vulnerabilities. Sounds like old childhood beliefs bobbing to the surface of your memory causing
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Eye to Eye – Soul to Soul you to regress. But let me tell you something about vulnerability. It is amazing. It exhibits your strength and helps with your personal growth. And when we show the person we love that we trust them enough to allow them to see us, to really know us; we’ve transformed the relationship. The love just doubled in size. Psychologist and author John Welwood writes, “When we reveal ourselves to our partner and find that this brings healing rather than harm, we make an important discovery – that intimate relationship can provide a sanctuary from the world of facades, a sacred space where we can be ourselves, as we are.This kind of unmasking –
We want the three C’s: CONNECTION COMMITMENT CARING
speaking our truth, sharing our inner struggles, and revealing our raw edges – is sacred activity, which allows two souls to meet and touch more deeply.” That is what we want, isn’t it? We want the three C’s and any other extra thing that may be included, because to love and to be loved is what it’s about. Chubby cherubs represent Cupid, which represents love. We are lucky when he decides to pay us an unexpected visit. Though when love enters, she initially appears as roses and romance. Just don’t ever think that’s all there is. Because when we muster up the courage to reveal ourselves – Eye to Eye, Soul to Soul – our significant other sees us, and love becomes quite generous. •
Lateefah Wylienga I am a Relationship Referee at TheCounselingKitchen.com! Breakdowns in communication are the primary reasons for failed relationships. In my practice, the fundamental elements of couples coaching create a common thread that binds everything together. I believe “The Story you tell is the Story you live.” Our lives are what we say they are. If we begin to tell our story as we’d like it to be, we begin moving toward what we are wanting to see.
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Sending Your Kid With Food Allergies to Day Camp
Sending Your Kid with Food Allergies to Day Camp
I
>>>>Lauren Kossack f your kids are like mine, they are counting down the days until summer break. For me, summer was filled with long days at the pool, playing with friends and attending
reminded, however, that every new phase of life and every new thing that I do with my little men frightens me to some extent.
Whenever I resolve to push forward through the worries and concerns, 99% of the time it goes well, and I’m so glad that I didn’t let the fear prevent my little men from experiencing life.
camp. I attended all sorts of camps. Over the course of my elementary and early middle school years I attended music camps, craft camps, sports camps, and outdoor camps. When I was a bit older, I even went away to week-long camps. I love to stay busy and meet new people, so camps were a perfect way for me to do all of those things while learning something new.
Camp is no different.
As a mom, I had always envisioned sending my
In the hopes of continuing to conquer those fears, I’ve signed my oldest up for two weeks of day camp for this summer. Of course as a food allergy mom sending our kids to camp doesn’t just begin with registration and end with dropping them off at camp. We still have lots to do to ensure that our children are safe while at camp. This isn’t an exhaustive list, however it will get you started and give you things to think about. Every child has different needs and food allergies that vary in severity. Our food allergic children can enjoy summer camp, too. We just have to take extra steps to ensure their safety. Here’s to a happy and safe camp experience! •
children to summer camp. Camp is not only a good way for children to stay busy or learn something new but it builds character, allows each child to step outside of their comfort zone and above all,
it teaches independence – something we all want for our children. However, now that both of my little men have life-threatening food allergies the thought of sending them to camp frightens me a bit. I’m
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Preparing for a Safe Summer Camp Experience
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Before beginning this process, talk with your allergist and come up with a medical food allergy action plan.
Seek out camp references from other food allergy parents who are well seasoned in summer camps. But remember, even if they answer your questions about any given topic, still ask the camp director to be sure that nothing has changed.
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Contact the camp prior to registration to ensure that the director welcomes your child’s needs, find out if there is a camp nurse on site, and ask lots of questions about food preparation, storage, cleaning policies, and how they handle medical emergencies.
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Once you have chosen a camp (or two), check in with the director and/or camp nurse again to ensure that they are ready to care for your child. Find out where the nearest hospital is located, what their communication policy looks like and whether or not the staff is trained & educated about food allergy symptoms and treatments.
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2-4 weeks prior to camp, contact the camp director and/or nurse again. (There is no such thing as too much communication when dealing with food allergies.) Go over your child’s medical action plan and ask specific questions. What is the menu for the week? Is there a nut-free table where my child can sit? What’s the hand washing policy for kids to wash their hands and face after they eat? Will there be any craft projects using your child’s allergens (e.g., bird feeders with peanut butter or paint containing egg, etc.)? Who will carry your child’s medicine if they can’t self-carry? And last but not least, who will administer the epinephrine should your child have a reaction?
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On the first day of camp, arrive early. Take a copy of your child’s medical food allergy action plan and all medications (I always want to include at least 2 epinephrine auto-injectors) and review it with the director, nurse and your child’s camp counselor. Be sure that your child wears his/her medical ID jewelry and knows what and where he/she will be eating.
Lauren Kossack Lauren Kossack is the founder and author of the blog “Our Life as an Epi-Family”. On “The Epi-Family,” Lauren writes with a mix of vivid stories, food allergy news, recipes, parenting tips, and questions of faith. She bares her heart as she shares her family’s struggles, victories, and daily adventures. She is a proud wife and mom to two young boys who have life-threatening food allergies and appear often on her blog.
SpecialMoms Parenting Magazine, Spring 2014
How
to
How to Overcome Overcome Isolation Isolation When Working From Home
>>>>Marla Murasko
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hen you work from home you can spend time with family, as well as set your own work schedule. But, being around small children or being alone so much of the time can breed a feeling of isolation. That can zap your creativity and focus if it goes on too long. Learn how to overcome separation from the rest of the world. As a work from home mom, the only other breathing person you may encounter on a daily basis is your children and/or your spouse. Most of us need more human contact than that. Coming from an outside working environment where there were friendly lunches and chats at the water cooler, sitting in front of a computer everyday can become a rude awakening. The silence can be deafening.
A drawback to isolation is mental changes. Whereas you were once gung-ho and intently focused on your new enterprise, now you are missing your friends and simple conversation.
At home , not a single word may be uttered all day. After a few months, the effects may start to show. Concentration drops, anxiety builds and a bit of depression may creep in. That is not the way that working from home was meant to be. •his is a test
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6 Ways to Combat Isolation Issues When Working From Home Cut the problem off at the pass. Use these six ideas to implement a way to stay connected from the outset of your home business life .
1. Leave the house – Get
outside and breathe the fresh air and soak up some good old vitamin D every day. Take the kids out to play in the park. Run your errands in the middle of the day when you are spoiling for a break. If you have a coffee shop nearby, spoil yourself once in a while and get a fresh, brewed cup of coffee made by someone else and sit and enjoy it. Just 15 minutes away from your computer, listening to other voices might just motivate you enough to head back to your office fully charged.
2. Separate your work life and home life – This can
be as simple an act as closing the door to your home office. Hang a sign on the door like a brick and mortar business that shows the hours of operation. When you close the door, there is freedom. I would even take it one step further, and turn off your phone or put it to silence. That way when you want to spend that quality time with your family, you don’t jump as soon as you hear the phone ring.
3. Chat with family and friends – Use Skype or even Facetime
family members who are far away. It’s nice to see the faces of the people who are important in your life.
4. Plan a few outings –
Set lunch dates with friends or your spouse. This is an excuse to get out of the house and also to catch up with them over a good meal. This is really a nice thing to do with your spouse especially, I know in my house it’s hard to have a good conversation or a least talk about vacations or work with my son around. My husband and I often schedule lunch dates for this purpose.
5. Network
– Hobnob with other business professionals at local Chamber of Commerce events. Check to see when there will be professional conferences in your area and register to attend. I also find it nice to attend some mom blogging conferences out of state. It’s easy to get recharged when you have inspiring women in the room. It’s a great time for collaboration.
6. Be Social – Social media has made it very easy for people to connect, make new friendships, get new business partners or even reconnect with old friends. Join some Google Hangouts, sign up for spreecasts or webinars. You can still always learn from home and chat with new business connections.
Stay sane while you work at home by staying connected with others.
SpecialMoms Parenting Magazine, Spring 2014
by Marla Murasko
Melanie Merritt of Joyful Blessings
Tell Us A Little About Your Business? Joyful Blessings is run on the “pay it forward” frame of mind. There was a time in my life, a few years ago, when I was down and out and people I had never met came together with people I loved and they helped me out. I promised one day to pay it forward, as I was raised to do. I am a mother to three amazing kids, two of them have special needs. My husband and I made the decision for me to stay home with them so I could be there for every therapy appointment and doctor’s appointment. This led to me having some spare time. I decided to start sewing therapeutic items for my son with Down syndrome to help offset some of the costs of similar products on the market. I learned how to make new items by scouring the internet for how-to videos and tutorials. One day I thought to myself, wouldn’t it be great to pay it forward by helping those families out that were in the same position as me? Joyful Blessings was created. I
started off small, by offering handmade quilts to families in the local hospitals. After seeing the tears in their eyes and watching the love of the children, I decided this is what I was meant to do. I decided to offer “freebies” for children in hospitals all over the country. Parents sign their children up with a special link found on our page. In order to fund the “freebies” we offer the same products and more for sale on our page. We have been able to fund these freebies with very little out of my own pocket for 3 years now! There is a waiting list for a freebie, but I do my best to get them all done and sent out in a timely manner. I love getting photos from the families that have received gifts from us, and they are also shared on our page as well. I am just a mom, trying to make a difference in just one life. It gives me purpose and hope.
How old is your business/organization: Joyful Blessings was officially created in 2011.
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Melanie Merritt of Joyful Blessings Tell us a little about yourself. My name is Melanie. I have been with my husband L.J. for 11 years. We have three amazing children and a super sweet pitbull. I am a stay at home mom for 8 years and love to sew, cook and run in my very spare time. I do volunteer work in the local schools and for several Down syndrome based companies locally and on the web.
Tell us about your family. My husband is a jack of all trades. He can fix and repair anything! My oldest daughter Skylar is 13, she has Aspergers syndrome and is headed to high school next year. My middle son, Dakota, is 8 and has Down syndrome. He is a lover of music and dancing. My youngest son, Eli, just turned three and he very much enjoys being the baby. We also have a sweet pitbull pup named Jude, he is amazing with the kids and we are so lucky to have him!
Share with us the diagnosis of your child(ren) with special needs. How did you find out? My daughter, Skylar, was diagnosed with Autism, specifically Aspergers Syndrome at age 8. We had brought her to a few places prior to that starting at age 3, but everyone wanted to medicate and we didn’t agree. It was a long road to get the official diagnosis, but it has been very worth it. She is excelling in school and an avid reader. I look forward to seeing where she lands in high school. My son, Dakota was diagnosed at birth with Down syndrome. I am one of the lucky few who had an amazing doctor who made me feel like it was nothing to be afraid of. So I am now on a mission to make sure others are being treated the same. It will be a long journey, but I hope someday we get there!
What is the most rewarding thing about being the mother of a child with special needs? I love my kids to death, I love being able to educate while we are grocery shopping or at the mall. I welcome any and all questions. I love the unconditional love shown to me from my kids. Sometimes this road has thrown me curve balls, but I have grown as a woman, mother, wife and friend because of it! I was created by the Lord above to be this woman. And I will be awesome doing it!
Is there a charity that you support, work for or are the Founder of that you would like to share? I volunteer with Alliance 21, our local Tampa Bay group for Down syndrome. I also used to be the Vice Executive Director for the IDSC.
What advice can you offer to other mothers who are looking to start a business? Do something you love! And give it all you have! No regrets! The first step is the hardest one. And don’t expect to make millions overnight. Use kind words ALWAYS, even if your customer/ client doesn’t.
What was the biggest struggle you encountered when starting your business? The biggest struggle for me, was people believing I was real. And people not understanding I am a one woman team. Its hard to be number 100 on a wait list, I get it!! But outside of Joyful Blessings I have a family to run. Sometimes I am fast at getting things out, sometimes I am slow. But I
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Melanie Merritt of Joyful Blessings never stop!! People ask where the money goes – it goes into a separate paypal account that is specifically for Joyful Blessings. Its hard to trust these days, I understand. But I assure you I am real. I am as real as you! Lets pay it forward!
Tell us what a typical day looks like in your household? HAHA!! My day consists of waking up, getting two kids read for school. Driving one to school, making it home in time to get the other on a bus. Getting the three year old settled. Doing a little homeschooling. Getting a little work done on the computer for a few groups I help in. Getting the three year old lunch. Chores. Picking up my son from school. At nap time I work on Joyful Blessings orders. Making snacks. Helping with homework when the teenager gets home. Making dinner. Getting kids to bed. Making more Joyful Blessings orders and going to bed. Repeat… If I am lucky I can fit a shower or meal in there for myself!
How do you balance work and family life?
how it works. Keeping your priorities in order.
Do you have any awards or recognitions you want to share? I am a Pinellas County Volunteer of the year for 2011. I am an official Hospital Ambassador for new families of Down syndrome.
What motivates you? My children are my biggest motivators, as cliché as that sounds. I never really had a purpose until they were born. They have driven me to become the best person I can be. They have made me more compassionate as a woman. And I am forever grateful to have them.
What do you see in the future for your business? I hope to be able to finally secure my non-profit status. I hope to be able to expand outside to shipping outside of the U.S. and I would love to take on helpers to help me get some of this wait list knocked out!! But most importantly, I hope to touch lives. That would be the sweetest gift. •
It’s a fine balance. Family comes first. Always. Anything other than family can wait. That is
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Advocate’s Corner: Pursuing
Advocate’s Corner: Pursuing Prader-Willi Syndrome
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’d like to introduce you to my limited-edition 5-year-old, Dean. He is a sociable and sweet boy who likes to hug or say hi to everyone in Starbucks or the grocery store. He’s loyal to his family and friends and has an impeccable memory (I call him my human GPS). He loves books and Star Wars (on his birthday recently, he declared himself to be Luke Skywalker and we had to sing “Happy Birthday” to Luke. ). He is so affectionate and his enormous dimples melt me every time. Dean’s sense of humor and open heart make many fall in love with him. I call him my “limited-edition” kid because Dean is part of a rare group of people, ones who have a genetic disorder called Prader-Willi syndrome. Affecting approximately 1 in 20,000 people (estimates vary, as with a rare disorder, there are many who have not yet been diagnosed), PWS affects both sexes and all races and ethnicities equally. Dean has the deletion type of PWS meaning that he is missing only a handful of genes on the 15th chromosome… genes that unfortunately control a lot of functions in the human body.
The primary concern with PWS and the one that you’ve likely heard about if you’ve heard anything about PWS, is the uncontrollable hunger that surfaces some time during childhood. While babies and young toddlers with PWS often have failure-to-thrive and require the assistance of special bottles and/or feeding tubes, this changes later on and an insatiable hunger develops. You know that awful feeling of being hungry and how irritable and distracted (among other things) it can make you feel? People with PWS feel like that all the time, even after eating a full meal. It’s cruel. I’ve heard people say, “Well maybe I have Prader-Willi since I seem to be hungry a lot.” No, no, it’s not like that. Let’s just say that when someone with PWS passes away, inevitably, another adult with PWS will say something like, “at least he/she isn’t hungry anymore.”
They know the unrelenting drive to eat (one adult calls it her “monster”) and can imagine the relief one would feel upon reaching the end of that fight.
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Pursuing Prader-Willi Syndrome As you might imagine, due to the unrelenting hunger, many kids and adults with PWS will go to extraordinary lengths to obtain food. Stealing, hoarding, secretly bingeing, whatever it will take. Because their bodies do not signal them being full, people with PWS will often literally eat themselves to death when their stomach ruptures as a result of extreme overeating. Combined with this drive to eat (hyperphagia), people with PWS have a much slower metabolism than those in the general population and often require diets of 600-800 calories a day to prevent rapid weight gain. As if that was not enough, PWS is associated with a host of medical issues that range from mild to life-threatening. These include speech issues, fine and gross motor delays, cognitive impairments, learning disabilities, sleep apnea, severe skinpicking, scoliosis, hypothyroidism, insulin resistance, incomplete sexual development, low muscle tons, gastrointestinal issues, mental illness, OCD tendencies, behavioral outbursts, and more.
As you might know, funding for research for rare diseases is difficult, as there often needs to be a large and ongoing campaign for AWARENESS so that people even know in what they’re investing (in fact, May is Prader-Willi Syndrome Awareness Month!).
Pharmaceutical companies aren’t always driven to fund studies because rare diseases, including PWS, aren’t much of a money-maker for them. In addition, with a disorder as complicated as PWS, there’s not likely one answer that will solve or cure it. Research has already made such a difference for Dean, primarily in areas of the benefits and safety of growth hormone treatment, the use of various drugs to help him with associated medical issues and functioning Continued on page 48.....
Ali Shenk Ali is a work-at-home mom living in Richmond, VA, with her husband and our 3 boys – Cole (5), Dean (5), and Emmett (3). She is an editor and writer, and volunteers for the Foundation for Prader-Willi Research.
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Business Briefcase: Why It ’s Business Briefcase: Why It’s Important to Study Your Competition Marla Murasko
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ith hundreds of thousands of websites, companies, and blogs, competition today is fierce - especially on the internet. The internet and most especially social media are responsible for creating waves of interest especially with your competitors. So what do you need to do to standout in all the social media “noise”? That’s easy, study and get to know your competitors. Rather than spend so much time trying to outsmart the competition, studying and making them your ally is a wise choice.
Studying Your Competition Start by doing an internet search of similar products or services. Search the local magazines and newspapers to get a feel for how many business of this type there are in your area. Go on to their blogs; check out their services, their prices and the quality of those services. How do they market them; is it through traditional advertising, online, or through video sales? They may have other products or services that you have not yet incorporated into your business model, for example:
• EBooks • Videos • Newsletters • ECourses Knowing your competitors’ strengths is important, as it can highlight your own weaknesses. If you know your competition’s strength, then you will be able to improvise and be innovative with your own products and services. If you know your competitors’ weaknesses, chances are you will be able to use that knowledge to maximize your company’s strengths.
What Is Their Social Media & Marketing Strategy • Start following them on social media. Whether that is on Facebook, Instgram or Twitter – follow them! Find out: • How many Followers do they have? • How long they have been around?How do they follow the trends? • See how people respond to them on social media.
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Business Briefcase: Why It ’s Important to Study Your Competition • Was there a campaign they did or a post or tweet that got a lot of attention? Study their marketing strategy: • Take a look at what may or may not be working for them? • See where, when and how many online campaigns they do? • Who is their target audience and where are they reaching them? • Listen to how they are speaking to their audience? Are they just talking to them or are they engaging with them, asking for their opinions, providing valuable information?
When You Become Familiar With Your Competition You Gain Valuable Insight
• You spark your own ideas with a creative and innovative twist. • You can follow and keep up with trends. • You can see what works. • You can see what topics are trending by looking at how many likes or retweets that company receives. Once you have acquired all this information it will be easier for you to create your social media/ marketing strategy. Good luck! •
Are you a Mom with a Dream of Becoming an Entrepreneur? Empowering SpecialMoms With a Dream of Becoming an Entrepreneur A blueprint for all mothers with a dream of owning a business. Whether you are a caretaker to your child with special needs, have a large family or are a single mother. If you have a dream pursue it! In this ebook I share with you my dream. My dream of owning my own business, becoming a mentor all while caring for my child with special challenges. I give tips on how to become an entrepreneur. Click here to download your Kindle version of the ebook.
Click here to download your Kindle version of the ebook.
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Book Review: Where Do Belly Buttons Come From? “Where Do Belly Buttons Come From?” is a delightful new children’s story by Pastor Jeffery Warren Scott. What a wonderful story using the simple fact of a belly button teaching children that no matter how different we all are, God loves us all. And if we ever have any doubts about God’s love to take a look at our belly buttons to know we have been touched by God. Love it! How beautiful, but simple! I love the idea of how excited Amy and Brennan get when they go to visit their grandparents. Spending time with your family is so important to create memories, and build a bond. It brought me back to when we would spend time with my grandparents and how special that time was. The illustrations in the book are wonderful and really help to tell the story. Children are very visual learners, so even though the story is a nonhistorical truth, the pictures help young minds to understand the story so much better. My favorite is the picture of the line of babies of all shapes, colors and sizes waiting in line for their belly button. It really shows how diverse we all are and that God loves us all no matter what are differences. Written by Dr. Scott who has a Ph.D. in Religion from Baylor University and Masters degrees in religious education and divinity.
Reading bedtime stories provide many benefits to children. Here are just a few benefits: • makes bedtime easier, more enjoyable, and something to look forward to for children and parents • helps a child feel special and loved as they share quality time with parents • creates memories for both children and parents • and this book can be a wonderful addition to your bedtime ritual. •
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Dr. and Mrs. Scott twitter
Continued from Pursuing Prater-Willi Syndrome (such as modafinil), protocols for dental care unique to PWS, as well as other studies that will benefit him as he grows older. This year and in years past, I have had the privilege of being an advocate (lay) reviewer for research grant proposals that come to the Foundation for Prader-Willi Research (FPWR) for funding. We read through the proposals, they are ranked by other advocates like me as well as scientific reviewers, and funding decisions are made. Each year, we get to fund some studies, and yet others are “left on the table,” so to speak. With greater funding, we can fund more of these projects that have to be passed over. What if one of those projects would lead to a breakthrough in PWS research? Therefore, I ask you to consider a donation to the Foundation for Prader-Willi Research at fpwr.org. Do it for Dean and for others with PWS who deserve the same opportunities to lead a long and healthy life as the rest of us do. •
Continued from Gary Dietz of Dads of Disability What goals or dreams do you see in the future for your child? I will be extremely happy if my son can go through the remainder of his residential placement, find and continue to develop a community of friends, and have him be happy and healthy in a living arrangement that is sustainable, safe, and makes him happy. •
Continued from Julie Bombacino of Real Foods How do you balance work and family life? This question assumes that I do balance them both! Honestly, it’s the most difficult part of being a working mom. I can’t just work 9-to-5, which I think is more and more common these days. I try to take time out for me and my husband but we are often on the backburner after the kids and work!
What motivates you? I remember those early days of having AJ on the tube and the 8 different formulas he ‘failed’. I swear I still have PTSD. The answer for our son was real food and it took months before I even heard of the idea of blenderized food or that I could even do such a thing. That motivates me. I don’t want any family or adult tubie leaving a hospital with a tube and thinking that real food is no longer a possibility.
What do you see in the future for your business or charity? My goal is that no one with a feeding tube will think that their only choice is formula, for every meal, every day. I want people to know that real food is still possible for the vast majority of those on tubes. I remember how disheartening it was for me to have to stop making food for AJ when he was tubed – and how healing it was to be able cook for him again. I want that for other families. •
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R eth in k ing
Rethinking Dyslexia
Mable Fox of Brightmont Academy
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ocal organizations are partnering to address the myths and stigmas associated with dyslexia and to uncover new learning and teaching solutions for students with the learning difference. The full-day event will include a film screening, presentations from local experts and solutionsbased exhibits on Saturday, May 17 from 10 a.m. – 3 p.m. at Schoolcraft College, located at 18600 Haggerty Road in Livonia. The free event is open to teachers who can earn up to four hours towards of Public and Private School Educators State Continuing Education Clock Hours (SCECHSs) as well as students and parents throughout the community to participate and attend. The highly anticipated film screening, Director James Redford’s acclaimed HBO Documentary “The Big Picture: Rethinking Dyslexia,” will provide a close look at the experience of being dyslexic. According to the New York Times, the film “busts any preconceptions about limits on what people with dyslexia can achieve.” The full-day’s lineup of presentations from local specialists will also include: • “Welcome and Introductions,” Mable Fox, outreach director, Brightmont Academy • “What is Dyslexia?” Dr. John McCaskill, clinical psychologist, McCaskill Family Services • “Building Better Brains: Teaching Strategies that Work,” Stephanie Cork, director of education, • Reading Language Arts Centers • “From the Right Environment to Success,” Ann L. Beatty, director, Michigan Dyslexia Institute“Teacher Tips and Legislation,” Lisa Barnett, special education teacher, parent of a child with dyslexia, founding member Decoding Dyslexia and Denise Diaz, parent of a dyslexic student, founding member Decoding Dyslexia, “Entering College,” Denise Schell, disability support services counselor, Schoolcraft College
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Rethinking Dyslexia The film follows Redford’s son Dylan as he is preparing to enter college—a major challenge for a boy who had a serious learning difference—and interviews several young dyslexic students and an array of public figures diagnosed with dyslexia and shares their decades-long research into the perplexing disability. “When I was given the extraordinary opportunity to make a film about understanding dyslexia, the mission was simple: make the movie I wish my family could have seen when my son, Dylan was functionally illiterate in fourth grade,” said Redford, whose son Dylan’s story is told in “The Big Picture” Documentary.
According to the Yale Center for Dyslexia and Creativity, dyslexia represents one of the most common problems affecting children and adults. In the United States, the prevalence of dyslexia is estimated torange from 5 percent to 17 percent of school-age children. “Dyslexia is the most common learning difference as one in five children have it, yet it remains to be the most publicly misunderstood,” said Sally E. Shaywitz, M.D, director of the Yale Center for Dyslexia and Creativity. “Many students still go undiagnosed, meaning they are often performing below their potential; the goal is to bring awareness to the disability and spread knowledge about teaching and learning solutions.” Many thanks to event sponsors, presenters and exhibitors: Michigan Dyslexia Institute, Brightmont Academy, Warner’s Corner Toys, LEGO Education, See it Right!, Reading and Language Arts Centers, McCaskill Family Services, U2 Can Learn, Decoding Dyslexia and Schoolcraft College. Registration is required to attend as space is limited. To learn more about the event and to register, please visit: brightmontacademy.com/the-big-picture.
Mable Fox Mable Fox is the Campus Director at Brightmont Academy in Livonia/Northville, a private school that specializes in providing one-to-one instruction for each student. For more information about Brightmont Academy, please visit brightmontacademy.com or call 734.548.8740.
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Letter of Intent Offers Peace of Mind:
Information of Interest to People with Disabilities and Other Special Needs and Their Families
Letter of Intent Offers Peace of Mind Provided by David A. Ramirez, a SPECIAL CARE PLANNER, ChSNC(1) with MassMutual Michigan Metro courtesy of Massachusetts Mutual Life Insurance Company (MassMutual).
A
Letter of Intent (LOI) is a document containing caregiving instructions to future guardians, trustees and advocates. It’s a necessary supplement to a Will or Trust in that it attempts to ensure that a family’s wishes will be fully understood and carried out. Although not legally binding, an LOI offers guidance to the courts and trustees. It typically includes a summary of family and financial information, as well as the child’s medical and social history—like the list of instructions you leave for a babysitter when going out for an evening. While length will vary, more detail is better than less, particularly if the child is non-communicative. The LOI should state specifically that the instructions it contains are not binding, so as not to interfere with the Special Needs Trust and so that the use of the trust fund isn’t conditional upon following the text of the LOI. Parents or caregivers should work with an attorney who has experience in creating these specialized Trusts to help them draft the LOI.
Seeking Comfort The instructions might include, if necessary, suggested remedies for calming down the child during an emotionally upsetting episode. For example, since many children with special needs adore animals, one instruction in an LOI could mention that a visit to the zoo might trigger excitability in the child and warn that, as a consequence, there’s a risk of the child disappearing into the crowd. In this case, the LOI could suggest that the child use a neck tag or wristband(like a medical-alert bracelet) informing strangers that the lost child has special needs in the event that he or she acts belligerently, and including a phone number for people to call in that event. These instructions will be particularly useful to help explain the behavior of a fully-grown child with Asperger Syndrome who is unable to recognize social cues and may say inappropriate things.
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Letter of Intent Remember that a caregiver reading the LOI at some point in the future might not understand the medical terminology that describes the child’s condition. Use plain language where possible, for example in parentheses after a difficult term.
Document Revision Families should conduct a review of these documents at every significant transition in life, including academic progression from elementary school to middle school and high school, and eventually the move into adulthood. An LOI will also need to be amended if the child develops an allergic reaction to a specific medication or if one form of therapy for the child is replaced with another, though such revisions generally aren’t expected to require substantial time or effort. It’s critical to carefully craft future documents in such a way to preserve government assistance such as Medicaid or Med-waiver, a funding source offering comprehensive services that include various therapies, respite care and housing benefits. Special Needs trusts must be carefully drafted to avoid disqualifying the individual from essential government benefits. A useful—and free—LOI template on CD-ROM is available from MassMutual to help walk families through the process.1
Emotional Acceptance A Letter of Intent should reflect a family’s core values, what they care about and how they’d like their loved one to be cared for in their absence. Understanding what makes children with special needs comfortable or uncomfortable in certain situations, and learning to anticipate their reactions, can take years of trial-and-error experiences before parents are able to sit down and adequately convey their wishes in an LOI. The same thinking applies to developing appropriate coping mechanisms as a family to deal with medical emergencies, behavioral challenges, sleeping disorders and other matters that future caregivers will need to know. Remember to include your child as much as possible in the creation of your LOI. Ask him or her what things matter the most: attending worship services at a particular church, visiting with a favorite aunt, wearing a certain outfit to a sporting event? Getting an education, working outside the home, being around family and friends? High-functioning children and adults, including those with physical disabilities and no cognitive impairment, are perfectly able to articulate their likes and dislikes and should have a stake in planning their own lives. 1 http://www.massmutual.com/specialcare The information provided is not written or intended as specific tax or legal advice and may not be relied on for the purposes of avoiding any Federal tax penalties. MassMutual, its employees and representatives are not authorized to give tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel.
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Letter of Intent (1) The Chartered Special Needs Consultant (ChSNC®) - a professional designation awarded to those individuals who’ve completed 120 hours of academic classes in addition to holding either Chartered Life Underwriter (CLU), Chartered Financial Consultant (ChFC) or Certified Financial Planner (CFP) designations and previously completing the Special Care Planner certification program. The ChSNC designation was developed by The American College in Bryn Mawr, Pennsylvania. The certification program and the professional designation evolved from MassMutual’s SpecialCare(SM) Program. If using the Brand Ambassador option, you also need to include the following (2)“Local sales agencies are not subsidiaries of MassMutual or its affiliated companies.” © 2013 Massachusetts Mutual Life Insurance Company 01111-0001 SC3111 CRN201507-173946 Steven J. Grogan, MBA Managing Partner | GPA Financial Group 51863 Schoenherr Road, Suite 102 | Shelby Township, MI 48315 Tel: 586-991-1116 | Fax: 586-932-3059 David Ramirez, CFP, CLU, ChFC, ChSNC Agency Director of Advanced Planning and Special Needs Planning Phone: 586-536-5012 Fax: 586-932-3059 E-mail: dramirez@financialguide.com
Book Recommendations “Same Lake, Different Boat: Coming Alongside People Touched by Disability” by Stephanie Hubach “Wonder” by R.J Palacio -- a children’s book “Complete Tubefeeding: Everything you need to know about tubefeeding, tube nutrition, and blended diets” by Eric Aadhaar O’Gorman “The Child with Special Needs: Encouraging Intellectual and Emotional Growth” by Stanley Greenspan “No Greatness Without Goodness: How a Father’s Love Changed a Company and Sparked a Movement” by Randy Lewis
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