0 , ! . . ) . ' s ) . & / 2 - !4 ) / . s ) . 3 0 ) 2 !4 ) / .
Parent Perspectives & Child Behavior
Milestone Based Guide
PATH to the Future
$FREE Enjoy Any Issue, Any Time! Subscribe Today!
Parenting Special Needs Magazine is a FREE, online publication. Empowering parents, caregivers, and everyone by providing resources, information and inspiration.
Subscribe FREE Today at WWW.PARENTING SPECIAL NEEDS.ORG
inside this issue... Jan Feb 2014 Features Moms Share 15 Real Deb Discenza Shares about starting
motherhood with a 10 week “Preemie”.
a Financial 30 Creating Game Plan A Milestone-Based Guide to a Special Needs Plan
to the Future 34 Path What are your hopes and dreams for your child?
Start 20 Running First Steps for Writing the Letter of Intent Glass Half Full: 26 AParent Perspectives and Child Behavior
psn community news
9 Noteworthy! Sensory Saturday at Miami Children’s Museum EIU Autism Center to open to serve individuals with autism Lekotek and Beamz Interactive Partner to Offer Beamz Family
check it out!
10 Products You Can Use & Win! real life Doug 22 Dr. Interactive Technology may
PROFESSION PROFESSIONAL AL
be a double-edge sword for children
Builder 24 Career Help Your Elementary School Youngster Cover Image Courtesy Billie Depatie www.d4photography.com Cheyenne Emily Tatiana Schaefer
Learn About Work
Moments 54 Proud Sharing “ I Can ” Attitudes JAN/FEB 2014
PARENTING SPECIAL NEEDS.ORG
inside this issue... your life
25 28 40
Sharing Real Finds Get Organized
Mommy Time Outs Lake Tahoe, CA
IEP Preparation: The Mama Bear Strategy - How to hide your claws and get what you want!
special resources Needs Planning 38 Special Services: Financial and Legal Counsel
Score BIG with Fun App Games!
health & ﬁtness Nutrition 42 Gluten-free for Weight Loss? Fitness Fun
Every Day Flow Chart: 44 Fitness A Guide for You (Yes, You)
54 in every issue 6 7 8 55
PARENTING SPECIAL NEEDS.ORG
psn contributors from the heart contest/giveaways psn apps & more JAN/FEB 2014
Special Diets Do Not Have to Break the Bank
fun & functional Tips 50 ASL Reading & Incidental English of Play 51 Power Making a wiggly worm and toothpick art while waiting in a restaurant
“Foodie” fun for kids: Easy Baked Turkey Meatballs
Get Noticed,Get Promoted EXTRA in our... PERKS for listing with us!
Resource Center www.parentingspecialneeds.org Serving the Special Needs Community
psn contributors making a difference FOUNDER/EDITORIAL DIRECTOR
Chantai Snellgrove firstname.lastname@example.org PUBLISHER/EDITOR-IN CHIEF
Tom Snellgrove email@example.com DESIGN DIRECTOR
Chantai firstname.lastname@example.org Meme Hieneman
Ph.D. in Special Education
M.S., YCS, Exercise Physiologist
Michael Leisttein email@example.com ADVERTISING SALES
Chantai/Judy Jaszcz Corporate Sponsors & Ad Sales Manager firstname.lastname@example.org
Curt Mellott MidWest & Lower Eastern email@example.com Robin Newman
LCSW, PC Clinical Social worker, Adjunct Professor
Ph.D. (“Dr. Doug”) Author, Full-time Contributing Writer
Jim Hasse, founder of cerebral-palsy-careerbuilders.com
Advertising Sales Person Needed inquire at Sales@parentingspecialneeds.org CIRCULATION & PR
Bob Jaszcz firstname.lastname@example.org WEBMASTER
Sean Thompson email@example.com Parenting Special Needs Magazine is available bi-monthly and distributed digitally for free. www. parentingspecialneeds.org Cynthia Falardeau Executive Director of the Education Foundation of IRC
Cristen Reat Co-Founder Bridging Apps.org
Ph.D., M.S.W. NYIT/VIP
Pediatric Occupational Therapist & Author
Every kid needs a mentor. Everybody needs a mentor. ~Donovan Bailey Sarah Cook
Photographer Cookwire photography
CFP The Special Needs Planning Center
Editorial Submission are welcome. We reserve the right to edit, reject, or comment editorially on all submitted material. We can not be held responsible for the return of any submitted materials. Articles and advertisements in Parenting Special Needs Magazine do not necessarily reﬂect the opinion of the publisher nor does the publisher assume responsibility for statements made by our advertisers or editorial contributors. Acceptance of advertising by Parenting Special Needs does not constitute an endorsement of products, services or information. Parenting Special Needs Magazine, is © 2014 Parenting Special Needs, LLC. All rights reserved. Reproduction in whole or part without permission is prohibited. PUBLISHED BY: Parenting Special Needs ,LLC 518 S. Valencia Circle S.W. Vero Beach, FL 32968
4EL s &AX
PARENTING SPECIAL NEEDS.ORG
editorial director from the heart
Creating Game Plans...
So, we have all safely made it through the holidays I presume. Although this time of year always tends to make me think of the new year in a â€œnewâ€? light, I canâ€™t help but also know that this time of year is crunch time for football season...playoffs that lead into the Super Bowl. Now, you may say to yourself, â€œwhat does that have to do with our special needs communityâ€?? Well, in fact, the basic principle that wins football games can also help us win in our desire for a better life for our loved ones: A GAME PLAN. This issueâ€™s theme is just that....creating a game plan. Not only a ďŹ nancial plan, but also an academic, social, lTNESS AND FUTURE PLAN 4HERE IS AN EXCELLENT PERSPECTIVE from a certiďŹ ed ďŹ nancial planner, as well as tips from lTNESS EXPERTS AND EDUCATORS THAT WILL HELP YOU PLAN OUT the coming months, and in some cases, the coming years. I know that looking at a game plan might seem like a challenging task, but, like the old question asks: â€œhow do you begin the journey of a thousand milesâ€??......the answer is: by taking the ďŹ rst step. ) TRUST YOUR IS lLLED WITH SUCCESSES AND TRIUMPHS
Coming Next Issue Cultivating Growth
Chantai Snellgrove Founder and Editorial Director firstname.lastname@example.org
PARENTING SPECIAL NEEDS.ORG
about our cover...
Great Giveaways Log on to parenting special needs.org click on CONTESTS and enter to WIN these great products.
Meet CHEYENNE EMILY TATIANA SCHAEFER, 6, who has been diagnosed with ASD (Atreil Septal Defect: wherein a hole between the chambers of the heart causes recycled blood to keep ﬂowing throughout the chambers). She loves to swim and skate and also loves her sparks group. Her parents, and her 2 year old sister, Brielle, are proud of everything she does and count every day as a blessing. They look forward to every new “ﬁrst” that she accomplishes. When Cheyenne grows up, she wants to be a mom.
Want W in I t ? it! Look for this symbol on pages then enter to WIN at PSN Contests
Easy Daysies from Ableplay
Write-and-Talk Speech Therapy Mirror by Fun and Function
Discovery Putty by Fun and Function
Time Tracker Visual Time & Clock
Cover Image Courtesy: of Billie Depatie www.d4photography.com
Toddlers ddlers on Technology
Billie Depatie is a photographer and owner of D4 Photography in Morinville, Alberta, Canada. She is also the Co-founder of the Tiny Light Foundation.
PARENTING SPECIAL NEEDS.ORG
Stay in touch in order to W in! Like us on
Facebook.com/ Parenting Special Needs Magazine
Parenting Special Needs.org/ subscribe
Follow us On Twitter PSNMAGAZINE
psn community news
Sensory Saturday at Miami Children’s Museum sensory saturday
Miami Children’s Museum: One Saturday of every month, MCM hosts yoga, art, music and other great sensory experiences. This event is for children with sensory processing disorders. Lights and sounds will be dimmed to create a comfortable environment for children to happily explore.Families can interact and network with each other to learn about resources in their community. Pre-registration is required. Please RSVP to sensorysaturday@ miamichildrensmuseum.org or call (305) 373-5437 ext. 126
EIU Autism Center to open to serve individuals with autism Eastern Illinois University, Charleston, Il.:EIU is continuing their support and dedication to children with autism by opening its own Autism Center. The Autism Center would attract more families to EIU’s wealth of services, and help give these families the answers they are desperately searching for. Not only will the center give priority to individuals with autism, but give extra time for faculty members and students to focus on these disorders as well. If anyone would like to donate or ﬁnd out more information about EIU’s Autism Center, they may go to www.eiu.edu/crowdfunding/autism/.
Lekotek and Beamz Interactive Partner to Offer Beamz Family Play Guide Beamz Interactive, Inc., a leading developer of state-of-the-art interactive music products, announced a strategic partnership with National al Lekotek Center, a nonproﬁt organization dedicated to making play accessible and inclusive for children of all abilities. The National Lekotek Center has created the Beamz Family Play Guide that will encourage family-centered play. The objective of this tool is to educate families on ways to address the development of cognitive, sensory, communication and emotional skills with the Beamz. While the Family Play Guide was developed to “teach to the disability” it provides a stage for creative expression, entertainment and interactive fun for the entire family.
helping families with music
Image courtesy Polaroid
PARENTING SPECIAL NEEDS.ORG
check it out! special products
Some of these Special Products are available for Parenting Special Needs Contest Winners. To enter, click on CONTESTS on our site and register.
Products you can use and win!
Put Time on Their Side
lanning is a skill many people struggle with so it’s a wonderful skill to begin teaching at an early age. Kids tend to live in the moment. Whether playing a game or watching a movie, all distractions fall away and they get absorbed in the sensory experiences they’re engaged in.
That’s fine, until children need to transition to the next thing or when panic sets in because time has run out. Planning is about picturing the future and making sure you have the gear you need to get what you want done. Making it a habit to plan out a day is a great way to build organizational skills in your young ones. Here are products that help:
W in it! Do you have a product you would like to share with our readers?
Helpful Books for Parents of Children T Complete Guide to Creating The A Special Needs Life Plan
Please send us an email describing your product. submit@ parentingspecialneeds.org Please make sure to put Product Share in email subject line.
PARENTING SPECIAL NEEDS.ORG
Easy Daysies is a magnetic daily planner that allows kids to move written tasks from one side of the board to the other as they are accomplished. This gives them a visual reminder of what’s to come and what has to be done. This concept also helps trigger feelings of success in children when something is completed.
by Hal Wright K Kingsley, Jessica Publishers T book provides comprehensive guidance on creating a life This plan to transition a special needs child to independence or to ensure they are well cared for in the future. Beginning with a vvision of a meaningful life for the child, Hal Wright explains how to form a practical plan to reach these goals, how to mentor personal empowerment and task skills, and how to create circles of support to sustain a life plan. JAN/FEB 2014
Time Tracker Visual Timer & Clock
W in it!
Planning is also about giving yourself enough time to complete a task comfortably. Some people habitually under estimate the time it takes to do something. Thatâ€™s why we love products that introduce the concept of time lapse. Understanding and relating to the movement of time takes practice. Products that can help kids learn vary from a simple egg timer to the Time Tracker Visual Timer & Clock from Learning Resources. This multi-tasking timer has all the tools for transition alerts along with a clock, lights and sound effects. Use these tools and make a game out of your child guessing how long it takes them to do a routine task like brushing teeth or getting dressed. This will help them learn how long things take. So, take the opportunity to teach your kids about planning and give them (and yourself) the gift of time For more play ideas and toys for children with special needs go to www.ableplay.org. This website was created by the National Lekotek Center to encourage children of all abilities to experiences the beneďŹ ts of play. Find us on Facebook Reviewed by Ellen Metrick, Director of Industry Relations & Partnerships, National Lekotek Center; email@example.com
W in it! T Toddlers on Technology
with Special Needs
by P. Summers , Dr. A. Desollar-Hale, H. Ibrahimb L Leathers Author house A easy to follow guidebook from parents for An parents. The book analyzes emerging scientiďŹ c research on Digitods, while helping parents grab tthe reins of digital technology and exert control, so tthey can balance lessons their children learn in the digital world with essentional lessons in real life, d cconcerning physical, social and emotional growth.
check it out! special products Ball Pit
W in it!
Write-and-Talk Speech Therapy Mirror
Practicing speech is easier and more fun with the Write-andTalk Speech Therapy Mirror. One side features a dry-erase board where you can write letters, words or pictures. Flip it and watch yourself practice sounds in the mirror on the other side. Portable, handheld tool provides visual and multi-sensory cues to improve vocalization. Crafted in the USA. 11”W x 9.5”H with 6” diameter mirror. Age 4+ Price: $$32.99
Jump in and enjoy the soft play environment of the Air-Lite Ball Pit! Fill with balls or pillows to experience sensory integration, touch and gross motor therapies. For example, hide a soft object for the children to search and ﬁnd. Roll, crawl, balance and jump in and out. Also perfect for quiet time, reading and speech and language therapies. Made from durable but soft ﬂock material. Inﬂates in minute with high volume air pump. 2 Year Warranty. Weighs only 9.9 lbs. 46” diameter with 24” high sides. Holds 500 balls, sold separately. Adult supervision required. Age 3+ Price: $189.99
Explorer Dome Conquer inner space with the Explorer Dome, an adventure tent that kids can use as a sensory getaway to calm down, read or just hang out. Free-standing dome sets up indoors or outside. Two ﬁberglass poles and pole sleeves make it easy and quick to assemble. Air ﬂows through one large door with window, as well as a window on the back wall, and a small vent over the front door. Use for toy storage when your child ends the moon landing. 5’x5’ with interior height of 34”. Age 3+ Price: $21.99 www.funandfunction.
Discovery Putty Hide and Seek! Discovery Putty is the playful way to strengthen hands and improve ﬁne motor planning. Stretch, mold and pull the putty until you ﬁnd all 15 surprises -- and then hide the pieces again. Animal Rescue features a bear, ladybug, monkey, frog, parrot, lamb, giraffe, ﬁsh, whale and alligator, hidden in brown putty (ﬁrm resistance). Grab the Goodies has fruits and different chocolates, donuts, cookies, crackers and candies, hidden in yellow putty (soft resistance). Supports speech and color recognition as players identify each piece. High quality professional putty in convenient storage tins. Gluten, casein, latex and soy free. Safety-tested. CPSIA compliant. Not for mouthing or chewing. Adult supervision required. Age 5+ $12.99 each www.funandfunction.com
PARENTING SPECIAL NEEDS.ORG
Enter to WIN at PSN Contests
W in it!
Click here >>
SS PP EE CC II
A LLTT H EE A A A LL H
00 11 11 A PP RR 22 A RR // A MA H H !! M
ealth Vision H
jury Brain In on Preveveernyti parent What
ative: Altern w Tomorro
ion cial Inclus ward So A PATH To
subscribe FREE today! Sharing = Caring
Be social share!
K CLIC ! HERE
parent pare aren en e n tingspec ingspec ing e c ialnee i lneed ed dss.o ..or org o rg
ÂŠ 2011 011 Fo Fox xB Broa r dcasting roadcast ttiing C Com ompa pan p ny
Lauren Potter - American Actress As an actress, Lauren has appeared on the hit show, Glee, but she is also an advisor to the White House for People with Intellectual Disabilities and appointed by President Obama. Lauren was born with Down Syndrome.
Support Different-Ability Awareness
Deb Discenza Life’s lessons
Starting motherhood with a 10 week “Preemie”.
eb Discenza is an author who contributed to this issue’s “Real Moms Share” section. We asked her to give us an insight into herself, as well as into her life raising her daughter, Becky. We asked her a series of questions; some serious and some “just for fun”. See what she said...
Photos Courtesy Deb Discenza
PARENTING SPECIAL NEEDS.ORG
PARENTING SPECIAL NEEDS: Tell us a little bit about yourself and family. DEB DISCENZA: Our family consists of my husband, Gregg, our daughter, Becky,10, our 7-month old kittens, Baker and Stormy, and myself. Becky is in 4th grade in our district’s advanced academic program (AAP) school, is holding her own and has a solid set of friends. She has come a long way from being born 10 weeks early and working through a Neonatal Intensive Care Unit stay as well as developmental delays and accompanying therapies, a diagnoses of Asperger’s Syndrome, ADHD, Sensory Integration Dysfunction, Feeding Aversions, Developmental Motor Coordination Disorder and asthma. PSN: Tell us a little bit more about Becky’s (early start, NICU Journey) diagnosis and personality. DD: Becky was born 10 weeks early after my water broke while in the car on a large family outing an hour outside of town. Thinking that I, embarrassingly, had a bladder accident in the car, I quickly discovered the truth and was alternately crying, apologizing to my unborn daughter and trying to use my cell phone to call my family members in the car. I spoke to two ladies in a store office and asked if could I borrow their phone to call my doctor. I had them rush out to the car to inform my husband of the situation as the doctor’s office answering service started to “page a doctor”. Fast forward to the hospital: I was given shots to stop the labor, a shot to mature my daughter’s lungs, and put on strict bed rest. Thirty hours later, I was told by the labor and delivery nurse I would be delivering that night. It was 20 minutes to midnight on Grandparent’s Day. Becky was arriving so fast that the doctor on duty was still parking her car at the hospital. A doctor on the floor had to step in and a short while later Becky was born. A nurse held my daughter up so I could quickly see her then whisked her off to the NICU with my husband in tow. Becky’s NICU journey was definitely a “rollercoaster” despite her strong start. After the “NICU Honeymoon”, Becky was working through a number of breathing issues that required her to be on a CPAP and “on and off” of oxygen. Her heart had three “holes” that were common (and expected to close), but she may end up needing heart surgery. She received
Parenting SPecial needS.org
my breast milk through a feeding tube for the first several weeks of her life and eventually took a bottle of fortified breast milk. Feeding issues that included a problem developing a solid suck/swallow reflex were an issue, as was GERD. Jaundice and anemia were also issues that were being addressed as they worked through tests on Becky’s eyes (she was at risk for Retinopathy for Prematurity), a hearing test and a cranial ultrasound for any brain bleeds. Everyday was different and while we saw improvement over time, we also saw setbacks including a very serious infection. Bit by bit I gained a little confidence by talking to her, singing to her, and doing Kangaroo Care. After 38 days in the NICU, Becky came home. She was required to be on oxygen and a monitor and was watched over by a pediatrician, cardiologist, pulmonologist, ophthalmologist, and a neurosurgeon. With Respiratory Syncytial Virus (RSV) starting as she came home, she received monthly Synagis injections until mid-spring to help her immune system fight the deadly virus should she contract it. My daughter’s feeding issues increased 5 days post-discharge and this landed her back in the hospital for 2 days. Within a couple of months, though, Becky shed the medical equipment and really “took off” as did my confidence in caring for her. The NICU experience has left a permanent mark on my husband and myself. Despite family and friends trying to tell me “she is out of the NICU and doing great, so you can relax now” my gut told me otherwise. I am glad I stuck to what my gut was telling me because a mother’s instinct is the best advocate for any child… and especially a special needs child. Photo Courtesy Deb Discenza
Fast-forward through the next 5 years and Becky was evaluated and qualiﬁed for Early Intervention for issues involving gross motor, ﬁne motor and speech and feeding. The sensory stimulation therapy we gave her (through Early Intervention), plus a local kids sensory gym, rocketed Becky forward and she graduated the program within 7 months. During preschool we discovered a repeated need for help and so she was entered into ChildFind Preschool to receive help with speech (she wasn’t talking in class) and ﬁne and gross motor activities. Kindergarten brought Becky into the world of the mainstream public classroom. At her ﬁrst IEP meeting, I was clear with the 8 people around the table that I was concerned that Becky may be doing well in school but that my gut told me something wasn’t right. I had voiced this so much over the years, but received little in the way of understanding. Becky was very bright (she started reading at 2-3 years of age) and in Kindergarten was reading middle school and some high-school level books. She also had a love for chemistry, astronomy and other hard sciences. She seemed to still maintain parallel play with other children and talked to adults like a “little professor”. She continued to have issues with feeding, ﬁne/
Becky loves to attend a local cat adoption fair, they call her “the cat whisperer”
gross motor skills and I felt, at the time, with her attention span even though ADHD had originally been ruled out. When the school psychologist pointedly asked me if my daughter ever looked me in the eye, I was shocked. Diagnosing autism? Now? In Kindergarten? I stammered that “yes, she did look me in the eye”. Testing was suggested and I agreed wholeheartedly. Yet nothing prepared me for the day the results came in and I met with the School Psychologist. Becky indeed had a high IQ and they suspected she had Asperger’s Syndrome. I left the meeting with tears in my eyes and spent the day alternately crying and calming down. Becky was ofﬁcially diagnosed with Asperger’s Syndrome and off we went with social skills therapy, occupational therapy, hippotherapy, nutritional therapy, a feeding program and more. In second grade, we added Attention Deﬁcit Hyperactivity Disorder to the plate and medication was started. In third grade we added Developmental Motor Coordination Disorder. We had always told her IEP team that we wanted to make sure Becky was getting enough educational stimulation given her intellectual interests. They had her work with the part-time advanced academic program at the school and she thrived. In second grade she was tested, and was accepted, into the full-time advanced academic program (AAP) for our school district. I was hopeful that she might ﬁnd some real friends in the classroom that had a similar personality as she did. The non-AAP program was leaving Becky with no friends at all. It ended up being the best decision ever because Becky now has a number of solid friends and she is thriving in a classroom environment that keeps her on her “mental toes”. PSN: Share with us something YOU, personally, had to overcome by being a
PARENTING SPECIAL NEEDS.ORG
mother to a special needs child? DD: That taking a “therapy break” is not only important, it is necessary. The therapy treadmill can really drain everyone in the family, especially the child. Giving my daughter time to focus on friends and “just being a kid” has been eye-opening. For the longest time we have not known a “normal life” and providing ourselves with self-care and selfnurturing was essential to our long-term happiness. Therapy will start up again, but this time, on our terms. PSN: What have been some of your biggest obstacles/challenges raising your child? DD: Feeding! Having a child with a very limited diet wreaks havoc on socialization, the grocery bill, and sanity. While I am grateful we did not have to bring our daughter home from the hospital on a feeding tube, it suddenly dawned on me that we were dealing with a much more complicated situation than your average selective eater. Thankfully, we had one feeding program in place and Becky’s diet has expanded nicely. But, we are still working through a lot of challenges. It hurts, though, when we get judgmental looks from other parents as our kid eats a huge plate of pasta and they believe that we are just bad parents or they tell us if we “just gave Becky to them for one week they would ‘ﬁx her’”. Our society still has a long way to go in terms of understanding conditions such as autism and what the word “spectrum” means. PSN: What has school/education been like for your child? DD: Academically, Becky has been very strong in language arts, social studies and science. Math has had some struggles, though. Our area is known for its school system, high grades and testing scores. Yet, we choose to focus not on the love of learning compared to perfection in academics. I am quick to step in and ask the teacher about ways to help Becky. I make sure to volunteer in the classroom as room parent, or in the school library, etc… so they know that the family supports her school and her hard work. I am not just Becky’s mother who is expecting things from the team…they know I am a full member of their team helping Becky.
PARENTING SPECIAL NEEDS.ORG
PSN: Do you have a proud moment you would like to share? DD: The day Becky’s feeding therapist came out of the session and told me my daughter had eaten popcorn shrimp. I was beyond shocked. I started to tear up . . . it was like I could honestly see a small light at the end of a very long, very dark tunnel. Becky was 6 years old at the time, and we had been working through feeding issues since her birth. PSN: What kind of life do you envision for your child’s future? DD: My daughter’s future is deﬁnitely on my mind. Part of me desperately wants to protect her from the bullies of the world. I imagine Becky will require some organizational assistance throughout the rest of her education and her chosen career and she will be on various medications the rest of her life. With help and with some understanding for her quirks, we pray our daughter ﬁnds a ﬁeld that ﬁres her passion in whatever way possible. I pray she starts to work around the feeding aversions and also works on a regular exercise routine to keep her healthy and ﬁt. As we hoped for a happy and healthy baby ten years ago, we pray for the same into adulthood. PSN: Share with us some life lessons you’ve learned on your journey raising a special needs child? What do you know now that you wished you had known earlier? DD: Well, my daughter recently attended the Washington DC Air & Space Museum’s adult lecture astronomy series that was put on through a partnership with Harvard University and NASA. Becky went toe-to-toe with the Harvard/NASA Astrophysicist grad student and her advisor over habitable planets. My jaw dropped as I watched my daughter (special needs and all) hold “her own” and ask a very pointed question. She did this with incredible poise that pricked my eyes with tears. All the hard work that we have put in over the years (and still do) is more than worth it. We are giving our daughter the tools she needs to function in a world that is slowly starting to appreciate quirks and challenges as gifts.
PSN: BOOK/ADVOCACY: You’ve written a book “The Preemie Parents’ Survival Guide to the NICU” and online support through “Preemie World”. What was your impetus/spark/motivation for writing your book (what was the moment that made you decide to take action)? DD: I have done a lot of advocacy work surrounding a few core issues in prematurity: 1) Respiratory Syncytial Virus (RSV) awareness and making sure preemies have access to life-saving medications. 2) making sure that parents have access to news, research, developmental resources and more. 3) public awareness of the issues surrounding the mental health needs of families in the NICU and after. Parents are often coping with the scars of the NICU and beyond that can lead to depression, PTSD and ultimately divorce/break up. The book has the same passion as the advocacy work – to help support families in the best way possible to help them help their child. Nicole Conn (co-author) and I wanted to re-think the preemie parent books out on the market and, as a result, we have created something special and extremely useful. This is the book Nicole and I would have wanted to have during our NICU journeys. It has received rave reviews from neonatology journals/publications both nationally and internationally. PSN: What are some of your main goals or mission with “Preemie World”? DD: PreemieWorld creates tools for the preemie parent and preemie professional communities. Whether it is our Preemie Parent’s Survival Guide to the NICU, our little man institutional license editions for professionals, or even our free printable newsletters, we feel that information on both of sides of the NICU, at discharge and in Early Intervention is wanted and essential. PSN: In conclusion, is there anything else that you would like to share with our readers? DD: PreemieWorld’s newsletters are available for free subscription to your readers at http://bit.ly/preemie1 (for Preemie Family) and http://bit.ly/preemie2 (for Preemie Professional). Y PSN: Deb, thank you so much for sharing with us your experiences and the lessons you have learned raising Becky.
n u f Just for about Deb What do you do to ﬁnd time for you? Regardless of what is going in work/ life, I make sure my daily schedule includes time to work out at the gym. And I try to take some time each evening to sit and listen to an audiobook and do a little needlework. Mommy timeout: Dream vacation? A month-long vacation with my family to the United Kingdom so we can roam around England, Ireland and Scotland. Favorite treat? Chocolate! Your one makeup essential? Face cream Do you drink Coffee or Tea? Tea. Although, I am more of a huge hot cocoa (with milk) fan. Are you a dog or cat person? A little of both, honestly, but our family has cats. Favorite wacky word or phrase from Becky? “I am not a baby!” When a docent at the Harvard/NASA lecture came up and enthusiastically praised my husband and myself on our “baby scientist.”
PARENTING SPECIAL NEEDS.ORG
Running START First Steps for Writing the Letter of Intent
he letter of intent (LOI), though not a legal document, plays a central role in your child’s special needs plan, putting its endless details into personal perspective. Distilling years of family experience, it’s meant to ease a difﬁcult transition by guiding future caregivers, guardians and trustees in the decision-making that will shape a loved one’s life when parents are gone. Families with special needs can be so overwhelmed by daily challenges that capturing lessons learned doesn’t top their to-do list. It’s also emotional, requiring them to envision a time when their child will be without them. But the LOI is too important to delay. At any time, an unforeseen accident could land you in the hospital, or worse, with others suddenly called upon to assume your responsibilities. So here’s a less daunting way to begin. Think about what you’d share with another family member if they needed to care for your child for a couple days while you were out of town. What would they need to know to maneuver 48 hours of caregiving? By concentrating on the basics, you’ll construct what I term the “executive summary” of your LOI; a two-page list of bullets that can be consulted when there’s no time to leaf through a notebook.
Begin by imagining what you’d share about any young child: Here’s what she’ll eat. This is what time he goes to bed. Then build on that with the extras required for a child with special needs. At a minimum, this “lean LOI” should include: ✓ Daily routine. ✓ Best ways to communicate with the child.
PARENTING SPECIAL NEEDS.ORG
✓ How to manage behaviors. ✓ Hot button words to avoid. ✓ Names and contact information for teachers, aides, bus driver, social service providers and employer. ✓ Medical information including names and contact information for doctors and therapists, lists of medications and location of prescriptions and pharmacy. ✓ Health insurance coverage. Make this a family affair. Bring everyone together around the kitchen table, including the child with special needs, if they are able to participate. Let the conversation ﬂow freely and just start taking notes; you can ﬁne-tune later. Siblings have a different perspective from parents and are often able to think of important details that mom and dad would overlook. Once you have your “short document” composed, share it with anyone who’s likely to need it in the future and keep a copy alongside your other important papers. Review and update it annually. Over time, you can build on this foundation, and you may ﬁnd it useful to cross-reference the bulleted with speciﬁc pages in the full LOI that you’ll eventually create. A more complete LOI should capture your child’s history, preferences, the texture of daily life and your aspirations for the future. Here’s a partial list of additional information to include: ✓ Contact information for family members and friends. ✓ Complete medical history. Also include medical history of immediate family members. ✓ Description of current living situation and, if that will change when you are no longer the primary caregiver,
by Brian Neal Rubin J.D. Special Needs Alliance
advice real life your preference for alternative arrangements. ✓ Financial documents. ✓ Public beneﬁts they are receiving—Medicaid, Medicare, SSI, SSDI. Include Social Security numbers for the child and both parents. Share tips for dealing with government bureaucracies. ✓ Local agencies through which they receive services. ✓ Legal documents, such as advance directives. ✓ Educational history. ✓ Employment history. ✓ Food allergies, likes and dislikes. ✓ Assistance required with personal care. ✓ Clothing sizes. ✓ Personality traits. ✓ Lessons learned and situations to avoid. ✓ Favorite things. Also explain what the child ﬁnds upsetting. ✓ Social activities. ✓ Pets. ✓ Hopes for the future. ✓ How to discuss a parent’s death or incapacity.
Special Planning for a Special Life
There are many sample LOIs available on the Internet, but, I suggest that you use them with care. Each child is unique, and you’ll almost certainly ﬁnd that these templates fail to address matters of importance to your child or contain sections that are inapplicable. Just cross out the irrelevant portions and, recognizing that this is your document, make any necessary additions. The LOI is an intimate document, containing much information that only family members can provide. As my wife and I wrote in our own LOI,“How do we tell you all about our son…his life, how to talk to him and get along with him, as well as our hopes and dreams for his future… all in a few pages? Impossible…but here goes.”Y
Have a question for “Ask the Professional”?
Send an email to: firstname.lastname@example.org Please make sure to put “Ask the Pro” in email subject line.
Ask the PROFESSION PROFESSIONAL AL
All individuals with intellectual and developmental disabilities deserve a dignified end of life. The Problem Strict Medicaid and SSI requirements limit options fund a respectable funeral. The Solution Our experts will assist you in funding your loved one's final expenses without compromising their valuable government benefits. Call us Today! Contact us today to protect your loved one by ensuring that resouces will be available to fund a dignified end of life.
2773 S. Queen Street Dallastown, PA 17313 Phone: 1-800-405-4232 www.specialconsiderations.com
INTERACTIVE TECHNOLOGY May be a Double-Edged Sword for Children by Douglas Haddad, Ph.D.
oday we see that technology has inﬁltrated the lives of children as young as infants. A recent survey on tablets and toddlers shows the number of kids using touchscreens has doubled in the past two years — almost 40 percent of babies under two and nearly 75 percent of kids under eight are using them. Although technology serves many beneﬁcial purposes, it brings with it some possible disadvantages for children of all ages.
The XO Tablet
The dangers of the technology dagger
In addition, there is a “Dreams” section that brings the different professions of the workforce right to children for them to be exposed to the different aspects of that job. A great thing about the tablet is that it provides parents with a tool called “Journal” that gathers information as to how their children are spending their time on the XO and where their strengths lie. This provides a great starting point for conversations about their child’s interests and passions in life.
❖ New guidelines from the American Academy of Pediatrics state children should not be allowed more than two hours of screen time a day and that children under two should not spend any time in front of a screen.
Vivitar and One Laptop Per Child recently introduced a product that I would recommend for kids preschool through middle school called the XO Tablet. It is an Android-powered learning tablet that possesses many features available across a broad range of subjects and skill levels. The child is able to learn other languages at an introductory level. There are also games and ebooks incorporated into the tablet.
❖ Research has suggested that young people are facing a “healthcare time bomb”. Musculoskeletal health-related issues have been linked to the use of computers, video games, iPads/tablets and smartphones. The research showed that The Leap Motion Controller nearly 3/4 of elementary school children and 2/3 of secondary school children have reported This new 3-D motion control technology opens back or neck pain within the d doors to interactive learning. Teachers can last year. When toddlers are beneﬁt from this product by getting all b “Technology is just using touchscreens, they are c children involved and it is an affordable a tool. In terms not strengthening the muscles way to provide enrichment at home this w of getting the kids necessary for writing. working together and sschool year. Kids are able to control their motivating them, the ccomputers with the use of their hands ❖ Therapists indicate that there teacher is the most aand ﬁngers for learning and exploration. are plenty of worthwhile important.” IIt comes with Airspace, which is an app educational apps for ~ Bill Gates sstore with access to educational apps of children, but suggest limiting (co-founder and chairman aall kinds for all ages across a variety of touchscreen use to no more ssubjects. than 15 minutes at a time.
PARENTING SPECIAL NEEDS.ORG
advice real life Some examples include:
❖ “Curious Kids” for early education in exploring animal sounds, practicing counting and playing the piano.
❖ Student learning can take place through authentic, challenging tasks at a child’s own pace and level and strengthen any weak areas to make them more rounded out learners.
❖ “TVOKids Caterpillar Count” for learning to count by guiding a caterpillar around the screen with their ﬁnger to collect numbers in sequential order. ❖ For geography, there is Google Earth for discovering cities, mountains, rainforests and oceans on Earth along with new sights on the moon and other planets. ❖ Science has a virtual dissection where kids can learn how the human body works by pulling apart and putting back together different portions of the body. ❖ Furthermore, kids can learn music through air drumming, harp plucking and piano playing.
Interactive technology serves many useful purposes for the future of education -- when used in
❖ It creates a balance between teacher-centered and student-centered learning to give the child some ownership of their learning. ❖ Helps to spark curiosity, maintain interest and strengthen motivation for learning. ❖ Creates a climate that supports learning both in the classroom and beyond the school setting into the homes. For more information on empowering your child and assisting in their maturation, decision-making, overall development and becoming super healthy: Check out Dr. Doug’s ofﬁcial website: www. douglashaddad.com.Y Douglas Haddad, Ph.D. (“Dr. Doug”) is a public school teacher, nutritionist and the author of parenting/child guidance book Save Your Kids… Now! The Revolutionary Guide To Helping Youth Conquer Today’s Challenges and co-author of Top Ten Tips For Tip Top Shape: Super Health Programs For All Professional Fields..
Help Your Elementary School Youngster Learn About Work by Jim Hasse
alk to your youngster about occupational interests and the speciďŹ c jobs and j titles which are job associated with those interests. Explore together what it t means to work. Itâ€™s never too early t begin talking to t your youngster to about occupational interests and the speciďŹ c jobs and job titles which are associated with those interests. At the elementary level, career information for kids usually focuses on: