Free Webinars and Training P.16
TIMES
MAGAZINE
Exceptional
What's Going ON?
From the Executive Director, Mary Jacob 2018, It's a Wrap! P.4
ISSUE 10
DECEMBER 2018
My Twelve-Year Vacation P.18
COVER STORY
EXCLUSIVE
MISSION The Mission of Families Helping Families of Greater New Orleans is to educate and connect children and adults with disabilities, and their families to resources, services, and supports to attend school, work, and thrive in their communities.
BOARD OF DIRECTORS Gregory Brenan, CPA, CCIFP, CGMA Lisa Gennusa Ledet Jo Ann D. LoRusso, Ph.D. Denise Barrera, MPH, MSW Judith Otto, LOTR, CDRS Debra Dixon M.Ed.+30 Jedidiah Jackson Ashley Bourg
OFFICE HOURS Monday: 9:00 AM - 12:00 PM, 12:30 PM - 4:00 PM Tuesday: AFTER HOURS 9:00 AM - 12:00 PM, 12:30 PM - 8:00 PM Wednesday: 9:00 AM - 12:00 PM, 12:30 PM - 4:00 PM Thursday: 9:00 AM - 12:00 PM, 12:30 PM - 4:00 PM Friday: 9:00 AM - 12:00 PM
OUR TEAM Mary Jacob, Executive Director mjacob@fhfofgno.org Ext. 207 Sharon Blackmon, Community Outreach Specialist sblackmon@fhfofgno.org Ext.208 Bebe Bode, Director of Public Relations bbode@fhfofgno.org Ext. 226 Nicole Desroche, Information & Training Specialist ndesroche@fhfofgno.org Ext.218 Liz Dumas, Administrative Assistant ldumas@fhfofgno.org Ext. 202 Laura S. Nata, Director of Peer to Peer Support lsnata@fhfofgno.org Ext. 209 Thuy Nguyen, CSHS Parent Liaison tnguyen@fhfofgno.org 504.896.1340 phone | 504.896.1360 fax Steven Nguyen, CSHS Youth Liaison snguyen@fhfofgno.org 504.896.1340 phone | 504.896.1360 fax Denise Sweatman, Director of Administrative Services dsweatman@fhfofgno.org Ext. 203 Minerva Flores, Outreach Assistant mflores@fhfofgno.org Jessica Rodrigue, Lead Training Specialist jrodrigue@fhfofgno.org Paul LeBlanc, Property Manager
700 Hickory Avenue Harahan, LA 70123 504.888.9111 800.766.7736 504.353.2350 fax info@fhfofgno.org fhfofgno.org
December 2018
Exceptional Times
04 2018 - It's a Wrap! 05 Teaching Your Child to Play 08 Success Story - Dylan Prescott Anthony 09 Memories and Tips from Holidays Past 15 Jefferson Parish Community Resource Fair 16 What's Going On? 18 COVER STORY - My Twelve-Year Vacation 20 Resources for FAMILIES & EDUCATORS 22 2019 Legislative Roundtable 23 JPHSA - Regional Advisory Committee
CONTENTS
ON THE COVER FHF of GNO Executive Director, Mary Jacob, Liam Anderson and Lily Olivia Edenfield.
04 From the ED
It’s hard to believe it’s already December and 2018 is coming to an end. This past year has been amazing for our organization. It all began with moving into our new building in January, and it certainly hasn’t disappointed us. The building has been everything we hoped it would be. Everyone that visits compliments us on how beautiful, warm and welcoming the office is. This is exactly the feeling we were hoping visitors would get when they stopped by. January also brought back the use of our official legal name – Families Helping Families of Greater New Orleans and the discontinued use of our trade name, FHF of Jefferson. Since our service area for most of our contracts was the entire GNO area, it made the most sense to go back and use our legal name. Twenty eighteen has been a very busy year which included starting Tuesday After Hours where our office stays open till 8 pm every Tuesday so parents that can’t get support during the work day will have a night option. These have proven to be very popular for working parents. In March we held a ribbon cutting and open house for our new office. We were thrilled to show off our new office to many old and new friends. We also introduced the first edition of our new Exceptional Times Digital Magazine. Like our office, our new magazine has also received rave reviews. Our Exceptional Times Magazine email list has gone up 30% since it’s inaugural March issue. We also brought back our weekly email blast with upcoming weekly events. Additionally, we hosted a luau at the office in honor of GiveNOLA Day. This day was filled with lots of fun, visitors, food and donations. Thanks to the generosity of so many, we reached our goal of $10,000. Our staff has also been busy learning. In July we hosted a Families Helping Families Statewide Retreat in Baton Rouge for staff at all FHF Centers around the state. We offered some fantastic professional development for staff, as well as networking opportunities and fun. Staff also attended our Regional Parent Training and Information Center Conference in Nashville, PEAK Center Inclusion Conference in Denver, National Nonprofit Technology Conference and Wrightslaw Conference right here in New Orleans. To be the best we can be, we are continuously learning. We’ve expanded our Louisiana Department of Education contractual services to include the development of statewide literacy trainings and the delivery of these trainings locally. Our fabulous team grew with the addition of Nicole Desroche, Sharon Blackmon, Jessica Rodrigue, and Paul LeBlanc. We also brought back Minerva Flores to round off our team. We were very busy spreading the word and educating individuals on some of the legislative changes this year, as well as the huge system transformation for waiver services. YOU contacted us, and we provided support to over 6,000 requests. We provided you with 148 training opportunities. We made over 275 community outreach visits and represented you on over 150 local and statewide committees and councils. Yes, 2018 has been a very busy year, and we are looking forward to more great things in 2019. I wish you and your family a very merry holiday season and a fantastic new year.
From the
Mary Jacob
Executive Director
2018 - It's a Wrap!
continued on p. 7
A toddler walked into my occupational therapy evaluation, avoiding eye contact and quickly moving towards the toys in the room. I watched him pick up a toy, deem it unacceptable, and move on to another. This process repeated itself for quite a while as I discussed concerns with his mother, until at last he found a toy train with wheels. Fixated on the wheels, he sat on the floor with the toy in his hands and spun them, staring at their rotation continuously. After a few minutes, I went over to try to play with him. At first he just ignored my attempts, walking away whenever I came near. He quickly became agitated as I persisted. I was intervening, after all; all he wanted was to continue his spinning activity, and I was in his way. In a fit of frustration, he threw himself on the floor and started crying, unable to verbally communicate his exasperation. His mother and I helped him calm down and began to discuss his play skills. She explained that her son gravitates towards toys but she has noticed that he does not use them as they were intended, just like when he spun the wheels of the train repetitively. She stated that disinterest in interacting with others was also typical for him, and that her attempts were met with little to no success. Usually, she said, she just gave up and let him be by himself, discouraged that she consistently made him upset when she would try to join in. She asked, “Can OT work on that?” My answer of course was YES! A child’s “occupation” at a young age is very simple: to play. Through play children learn countless lessons and develop valuable skills such as motor coordination, spatial awareness, and appropriate social interaction. Sometimes, the skill of play is something that does not come naturally for children. They may have to learn how to play. Early on as an OT student, I watched an interview with Dr. Stanley Greenspan, who pioneered what’s known as the Floortime approach. Dr. Greenspan believed that in order to engage and play with a child, you literally have to get on the floor to be on their level. In the interview I watched, Dr. Greenspan referenced a child who participates in repetitive play schemes, and said something along the lines of, “Well, if you can’t plan and sequence, you’re going to repeat.” This concept was groundbreaking for me: a child who is repetitively spinning, watching toys fall, or lining up cars most likely has a motor planning deficit. If a child cannot come up with a play scheme, sequence the steps, and follow through with their plan (eg: rolling a train on a track under a tunnel) - of course they are going to repeat what they do know how to do (eg: spin the wheels). It’s not necessarily disinterest in play; it is a deficit on knowing how to play! Dr. Greenspan’s quote continues to guide how I teach children, like the one mentioned above, to expand their play repertoire. When that little boy came to each occupational therapy session after the initial evaluation, my goals were to build good rapport, show him how to play differently, and show him how playing with other people can be so much fun. The way I “showed” him was by entering his world first until I had his attention, then extending our interaction just a little bit at a time. Since he loved to spin toys, I started with a few different ball towers. He began our sessions with just spinning the balls, which I would join him in- but then I would take a ball to the ball tower, place my ball at the top, and watch it roll down. He watched me, clearly interested but unsure on what to do. I gently touched his hand holding the ball, then touched where it was supposed to go at the top, giving him a physical cue to show him how to plan out the sequence. He was motivated to try it, because this fun activity also incorporated his love of watching things spin. After a few more physical and auditory cues, he slowly but surely learned the sequence; place the ball at the top of the tower, watch it roll down, and repeat. It went this way for many sessions. I would join him in spinning toys, rolling balls, and pressing buttons- and when he giggled with me, I would then find a way to add a step to what we were doing. It has been a process, but his play skills and interaction with others have improved drastically. The tenets of Dr. Greenspan’s Floortime Approach provide a treatment approach that I have found to be successful. Teaching parents how to successfully play with their child is a vital part of treatment as well, not only for their child’s development and learning, but for their own role as a parent. Below I have outlined strategies on how to facilitate more successful play with a child who struggles in this area. Meet them on their level, on the floor. Just being on the floor with your child is instantly more engaging for them. Crawling, laying down, rolling- your child does it, you do it too! Follow their lead, then expand it. Your child lines up the cars? Start by lining them up too, then show them how you can push the line of cars using the back car. All of a sudden, your car line is moving towards the end of the coffee table, falling hilariously one by one. Your child then brings the fallen cars back to you to put at the end of the line. What started as lining up cars has grown into a multi- step play scheme! Include high affect and big movements. Using a voice that fluctuates in volume and tone can catch the attention of your child and be more engaging. For a child who has difficulty acknowledging others during play, big exaggerated movements, sounds and facial expressions can really help! Understand their sensory needs and preferences. Have a kiddo who likes to watch things spin? Take turns placing balls at the top of a ball tower. Have a child who loves to crash? Make a game out of jumping to and falling on the sofa cushions. Choose play activities that match what they like! If you have their attention, keep it. It’s okay if you’ve been playing with the same toy for an hour. If you have their attention and are interacting back and forth in play, keep it going! Drawing out interactions to capitalize on the anticipation factor, such as waiting for a bubble to be blown, is helpful as well. There’s definitely a delicate balance in teaching your child how to play more functionally while enjoying it at the same time. If you feel your child could use some guidance in learning how to play, reach out to your pediatrician for a referral to occupational therapy. Parents - I am enjoying sharing my OT brain with Exceptional Times! If you have any other topics you would like me to cover, please reach out to me at rconnick@cranerehab.com
“Well, if you can’t plan and sequence, you’re going to repeat.” Dr. Stanley Greenspan on repetitive play.
Teaching Your Child To Play
Rebecca Connick is an occupational therapist at Crane Rehab Center- Pediatrics in New Orleans as well as an Early Steps provider. A certified user of The Sequential Oral Sensory (SOS) Approach to Feeding and a Mentored Clinician of the STAR Institute's SPD Level 1 Advanced Intensive Mentorship program, Rebecca treats many children with sensory processing deficits and feeding disorders. For more educational articles by Rebecca, follow her blog at https://fingertips.home.blog/ or on Facebook @fingertipsblog.
2018 - continued from p. 4
Families Helping Families of GNO will be closed from December 17, 2018 - January 2, 2019.
Happy Holidays!
About Children's Special Health Services (CSHS) The CSHS program is the principle public agency ensuring that children and youth who have special health care needs in Louisiana have access to health care services designed to minimize their disabilities and maximize their probabilities of enjoying independent and self-sufficient lives. About Thuy and Steven Nguyen Thuy has been with FHF of GNO at the CSHS Family Resource Center for the past 16 years. Thuy benefited from CSHS for her son, Steven, and was inspired to help other families who have children with special health care needs because of the support they provided her family. Steven has been with FHF of GNO as the Youth Liaison with CSHS Family Resource Center for the past 5 years. Steven was a former patient of CSHS and because he received their services, he is the perfect person to provide mentoring to other children and youth with special health care needs. He also assists with the planning and implementation of CSHS program activities.
Success Story
Dylan Prescott Anthony
While attending therapy at Children's Hospital for my son, Dylan, one of the staff members there introduced us to Thuy and Steven Nguyen. Thuy and Steven both work for Families Helping Families of Greater New Orleans in the Children’s Special Health Services Family Resource Center. Since my son was turning 16 in a couple of months, I wanted to know what I needed to do to help him have a smooth transition to adulthood. So, I asked them if they could provide us with any information that could help and they did. The information, resources and support they provided helped us in understanding and identifying the necessary steps we need to take in the planning process. We go to Children’s Hospital every week and we always try to stop by the Family Resource Center to visit with Thuy and Steven. They are a wealth of information and keep us informed about any events happening in the area. Through talking with them, my family has learned a lot. It is always a pleasure when we get to see them. They especially include Dylan in our conversations and joke around with him which he enjoys very much. Because of the challenges that transitioning to the adult world can have on families and young adults with disabilities, we would like to thank Thuy and Steven, for providing us with these resources and keeping us informed and up-to-date with current information. We feel relieved and better prepared now that our paths continue to cross.
By Terry Ellis
Every time a bell rings an angel gets his wings.
Holidays Past
‘Tis the season for holiday cheer, fun, and family time! We at Families Helping Families of Greater New Orleans love this time of the year as we get to celebrate with family and friends. However, this time may also offer certain challenges for families who have children with disabilities or special health care needs. We reached out to several moms in the state and asked them if they would like to share some memories and tips of their past holidays with our readers. We graciously received several stories from some awesome moms that are very heartwarming and insightful. We are very excited to share these stories with you and hope you enjoy reading them as much as we did. Special thanks to all the mothers who shared their stories with us. We wish all of you a Blessed holiday season.
& TIPS from
It's a Wonderful Life 1946
Memories
I became a parent 37 years ago, but life took a different turn when my son Michael was born 21 years ago. Michael has a disability known as Prader-Willi Syndrome; a multifaceted diagnosis that has, as part of the disability, the inability to feel full no matter how much he eats. Anyone who lives in Louisiana understands how much food is part of any family gathering, especially holidays. It took my family years to come up with a plan that worked for us, and I will be sharing some of these tips with you. I have five children, seven grandchildren, siblings, in-laws, nieces, and nephews and when we all get together, it is chaotic, loud, with mass confusion, overstimulation, and meltdowns. I am realistic about what our events are like, and set expectations with as many adults as I can get on board each year. Safety is the primary concern, and we have found out long ago that if everyone is watching Michael, then nobody is watching Michael. We assign shifts, that way everyone gets a chance to eat and enjoy the holiday and Michael stays safe. If Michael gets anxious or if something happens that he does not expect then he is prone to meltdowns. We start planning with Michael about a week before the event. Our event planning includes discussing who is going to be there, what we are planning on doing while we are there, how long we are planning on staying, what food will be brought by whom and we discuss the different choices he has for his meal. We also set up safe words and signals for him to let us know when he is getting overwhelmed. We look for a quiet place for him to go and decompress is he gets overwhelmed. We help him pack a bag with some special items that will keep him occupied and happy. There is a core group of us who know what his triggers are and look for antecedent behavior, with strategies to defuse the behavior if a situation starts to escalate. We have learned the hard way that there are things you have to be aware of and plan for. First, children make great accomplices; they want Michael sitting with them for meals, very sweet until you see them give him their vegetables. More than once I have seen a child wandering around with cookies and when asked I have been told Michael said they could have a cookie if they bring him one. I must admit I was impressed by their problem-solving capabilities and ability to work toward a common goal but it still not going to them get a cookie. If Michael is left unsupervised, even for 3 minutes for an attendant to go to the bathroom, he will use this opportunity to steal food. Vigilance can’t be overstated where Michael is concerned. If this sounds like a lot of work, it can be, but it allows us to enjoy being with family and friends. Have we had problems the answer is yes, but our outcomes have been better since we have started planning our outings. I'd Rather Play with the Boxes! - Bebe Bode Personally, our family celebrates Christmas, so when my son, Seth, was a toddler and this time of year rolled around, I struggled to figure out what would be the best educational toys that I could by him. Seth has autism and I’d constantly worry whether I was doing enough, or doing the right things to help him thrive. So I would look for toys that I could buy that would engage him in speech and language, gross and fine motor, sensory processing, memory, concentration, etc. since all of these skills were significantly delayed. Educational experts and pediatricians had their own advice for parents on what toys they thought were best for children with developmental delays. I figured, if the experts recommended them then they were what he needed. So, I bought these expensive toys, wrapped them up and eagerly waited for Christmas morning and him to open them up and show interest in them or be excited. Unfortunately, that is not what happened. Seth spent more time playing with the boxes his toys came in rather than the actual toys. When this happened for other gift giving holidays and events it began to depress me. Especially when I’d see other children enjoying opening their gifts and playing with them. After the holiday season was over, I was able to engage Seth in play with some of the toys we bought him, but not always. So, another year goes by and the holidays are creeping up on us again. I’m in crazy bat mom mode trying to figure out what I could possibly get that he would enjoy. What could I find for him to play with that would interest, engage him and that HE would be overjoyed to receive? I am going to show my age here - Back when Seth was young, VHS tapes were what was available in video and inside the VHS tapes there were always offers for different items. As I was looking through the offers, I found a big red cardboard Winnie the Pooh Schoolhouse for $12.99. It was like fireworks went off ... A BIG RED CARDBOARD BOX with his favorite Disney characters on it. The box is the present... I’m so getting this for him for Christmas! I was pretty sure he’d love it, and he did! (Doing the washing machine dance!) I showed my age again - I guess now it would be "Flossing" LOL! That box saw Seth and every single one of his cousins, us, aunts, uncles, and friend's children inside it playing with him. It had all the educational components both the professionals and I looked for in a toy. It engaged him in language, pretend play and socialization; we would cuddle up in there with pillows and blankets, read books, complete puzzles, bounce on balls, etc… The list is long. All for $12.99 plus shipping and handling. The reason I share this is we can all get creative and not get caught up in the trap of having to buy the most expensive educational toys and gadgets that our children don’t even really want. We didn’t have Pinterest back when Seth was a toddler, but times have changed. These super cool cardboard box ideas will make you wish you were a kid again. A Little Miracle - Mallory Brown “Mrs. Brown, I’m sorry but we think your baby may have had a stroke.” I will never forget those words as I heard them at just 18 weeks pregnant with our sweet Maddie. My life was changed forever at that moment. The news came right before Christmas 2010 after finding fluid on the left ventricle of Maddie’s brain. Little did we know, that would be the least of our worries. Doctors informed us that her chances of survival were low, and I remember our hearts pounding with each ultrasound that we could find a heartbeat. That Christmas, I sat by the Christmas tree with everyone around me opening presents and laughing, saying prayers to myself that we would have a baby, no matter what that entailed, to bring to our family’s Christmas the following year. In June 2011, our miracle Maddie arrived. She not only had fluid on her brain, but we found out she had a cleft palate, a very rare chromosome deletion, and she was deaf. As new parents, we were terrified. One of the doctors in the NICU told us that Maddie had less than a 10% chance of living a “normal” life and cognitively she would never be over the age of one. I did what every good mother would do after that conversation, I asked for another doctor. I knew that if Maddie was going to be given such low odds, she needed a doctor to fight with us to give her the best care and the best odds she could get. Fast forward 7 years later; Maddie continues to beat all odds! We were told she would never walk and were brought a catalog to pick out a walker; I threw the catalog out and bought walking wings to get her to learn how to walk on her own. We were told she would never be able to speak, so we learned a new language where Maddie has now been able to communicate using American Sign Language fluently. We were told she would need open heart surgery, and miraculously, her hole in her heart healed on its own. There have been over 600 hours of speech, occupational, and physical therapy to get Maddie where she is today, but she has a fighter’s heart that has pulled her through and let her overcome every obstacle put in her way. As a mother, I sit every year and stare at the lights on the Christmas tree and think about all the blessings and miracles that I have received. We have been blessed beyond measure with wonderful therapists, doctors, and nurses that have now turned into lifelong family friends. Maddie doesn’t meet the criteria for what a “typical” 7-year old would do, but I am thankful for each day that she is able to run up to me with those strong legs of hers and give me a big hug around the neck with her little fingers and sign “ I love you, Mama.” I encourage you as a parent of a special needs child to remember that this holiday season isn’t about the presents under the tree, but the presence of your child, the true miracle that you get to enjoy and fight for every day that you wake up. They truly are the REASON for the SEASON.
Holi-Daze - Patsy White
She Woke Up - Kim Basile Our daughter Caroline (Lovey) is 11 years old. She is a beautiful, funny, loving pre-teen that loves her clothes and a messy bun! She also has autism, PICA, ADHD, seizure disorder, and major gut issues. But these diagnoses do not define her. Lovey was born in August 2007 and spent 12 days in the NICU. When she came home, she was blind, had suck swallow breathe issues and was considered “floppy baby” along with her gut issues. We spent most of her first Christmas in the hospital in the PICU. It is all a blur. Caroline’s eye doctor told us there is a great chance she may never see. We were also told she may never walk or talk. And so began our journey. We found Early Steps thanks to a wonderful neighbor. Caroline began receiving OT, PT, ST and vision therapy before 6 months of age. After a lot of blood sweat and tears and much help from our friends and family and our wonderful doctors at CHNOLA and all of Lovey’s therapists, Caroline slowly began to progress. She “woke” up as the eye doctors called it. She could see! The doctors do not know how or why. We believe it was with the help of St. Lucy. Caroline could not roll over or crawl or walk. My dream was for Lovey to walk into Christmas Eve mass with me – with a K walker. Christmas Eve of 2009 Caroline walked into mass holding my hand. She was shaky and needing help, but she did it! Since that time Caroline has defied all odds. It was not all sunshine and roses. There was a ton of screaming and crying, and that was from me! We were not able to go out in the community without a total and complete meltdown for years. There was a year of 17 hospital stays. There is ongoing intense behavior therapy. But, today, she is a wonderful, happy, fun-loving kid that will receive Communion on Christmas Eve.
Gifting and Disabilities - Sharon Kelly Blackmon I have a really tough time with gift-giving when it comes to my son, who is now 20 and has autism and an intellectual disability. But I have had a couple of interesting lessons along the way, and from some surprising places. One of the para-educators at his school a few years ago wanted to give a small gift to each of the students in her class. When my son got home the last afternoon before Christmas break, I found her gift in his backpack: a pair of black socks. I almost cried. Realizing that he was, in fact, a teen and not a toddler, she had decided on a gift that was more age-appropriate and practical instead of a baby toy. I was amazed and thankful for her insight! Around the same time, a neighbor that my daughter and I had met on our morning walks brought Christmas gifts for both the kids. She didn’t know my son but knew his age and that he had a disability. It was a VERY nice gift set of a popular brand of body spray and soap that is supposed to make the young man who wears it an absolute chick-magnet! While this mama wasn’t so crazy about the “chick-magnet” part of it, I’ll admit it made him smell good! And again I was reminded that he is no longer a baby and should be treated (and gifted) age-appropriately and with his interests in mind.
A Cheap Christmas Story - Jeannie Doiron It was the Christmas of 2003. I was separated from Lucas’ Dad and still mourning the loss of my marriage. Paying a lawyer and not having a second income was seriously making an impact on Christmas presents. While shopping with my friend Julia, I found a Thomas the Tank Engine comforter on clearance at the local Target. Julia ribbed me a bit because I told every passing person I had scored the best bargain ever. I really hadn’t discussed my finances with anyone; too much pride and too small of a throat, so I really was suffering in silence. However, the thing that made the biggest impact in the separation was having had one less book reader in the house. Night time usually had Lucas sitting with either of us while we read his books. Now, the chore of reading along with cooking and cleaning after a long day of work made for a frustrating time for both Lucas and me. I had to do something. I loaded a bunch of Lucas’ books in my trunk along with my video camera. I borrowed a tripod from a friend and began traveling to friends and family member’s homes after I would knock off from work each night. While there, they would read a book or two for Lucas and give a good Christmas message on camera. After about 2 hours of recording, I transferred to a VHS tape. On Christmas morning, Lucas opened his two presents and squealed with delight as he wrapped himself in his comforter and popped in his tape. He sat there all day, repeatedly watching Pastor Bill read Dr. Seuss, Mr. Doug sing a song, Aunt Nikki, Gramsie, Emma, Ryan, Aunt Monica and more of his favorite people, reading his favorite books. The thoughts of this Christmas make my heart happy; for less than $25…Boyah!
Creating Your Own Holiday Standards - Angela Lorio Discovering our new normal has been an adventure! Merry Christmas are the only words we say to express our goodwill during this season. Jesus is the only reason for this season and getting through each day since our son John Paul was born is our daily goal. John Paul was born a preemie at 27 weeks and weighed a whopping 1 pound 12 ounces. John Paul’s first Christmas home didn’t include lots of visitors. We had very few people over for the holidays and didn’t go anywhere because he was so prone to RSV. I kept the traditions that I could but was so grateful he was alive and home - little else mattered. I bought a plastic wall decoration of a Christmas tree, and that replaced a real tree. We had lights up everywhere, including around the front window frame where we kept them up for about a year after because John Paul liked them so much! We cherish the simple moments we experience instead of what could have been and comparing ourselves to others. The first year we stuck a bow on his head and took his first Christmas picture. By year two, John Paul was horrified by a stuffed Santa decoration that someone gave us. In year three, John Paul was interested in wrapping paper and learned to tear a little. We also took him to New Orleans to see the Roosevelt Hotel lobby and Christmas in the Oaks at City Park, which was one of my traditions as a child. The fourth year we went to a sensory friendly Santa photo experience that we survived. Also, we took him on the Polar Express, and it was the first time he was face to face with Santa and was ok with it! This is John Paul’s fifth year, and we will be spending it with his YaYa, my mom who has not been in Louisiana for Christmas in 12 years! We will be staying at a home in Mississippi and cherishing moments and making new memories. Norman Rockwell paintings of holidays are just that; a painting. Real life with a family that has a child with a disability is a unique adventure of discovery. Your holidays are what you make them. Choose your activities wisely so everyone can enjoy moments. Be extra kind to yourself and remember you don’t have to keep up with any standards of a holiday. Make your memories your way. Peace from my family to yours.
Free WEBINARS
What's Going On?
Basic Rights in Special Education - Whether you’re new to special education or involved for a while, this workshop is for you. This presentation provides families with an introduction to their rights and responsibilities as parents of children with special needs under the Individuals with Disabilities Education Act (IDEA). Parents begin to identify dreams and goals for their children, understand laws and learn advocacy strategies that will help them help their children reach those goals. Co-Sponsor: Families Helping Families of Greater Baton Rouge Date: Monday, December 3, 2018 Time: 10:00 a.m. - 11:00 a.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Understanding the Importance of Inclusion - Why is inclusion of children with disabilities in schools, classrooms, and communities important? This webinar answers that question. It explores what inclusion is and is not, who’s involved in making meaningful inclusion successful, and its underpinnings in federal law. Date: Monday, December 3, 2018 Time: 9:00 p.m. - 10:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Introduction to Special Education - Do you suspect your child could benefit from special education and related services? or, Is your child newly evaluated? If so, this training is perfect for you. This intro to special education will give you a strong foundation to build future knowledge. You will learn the very basics through the philosophy of special education, the laws, evaluation process, and ultimately an IEP. Co-Sponsor: Families Helping Families of Northeast LA Date: Wednesday, December 5, 2018 Time: 10:00 a.m. - 11:00 a.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Accommodations vs. Modifications - Meeting after meeting, parents and teachers use the words “accommodation” and “modification” almost interchangeably when discussing IEPs and student needs. If understood and used correctly, these words can greatly impact the success of a child’s educational program. Get answers to these questions and more: How can accommodations and modifications help my child in the general education classroom? How are accommodations and modifications included in IEP? Which accommodations are provided for state testing? Accommodations and Modifications can be a game changer for your child. Date: Wednesday, December 5, 2018 Time: 7:00 p.m. - 8:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. IEP Tips and Pointers - This webinar features tried and true tips on how to positively advocate for your children, strengthen the relationships between parents and service agencies, and help create the appropriate IEP program. This webinar is perfect for families looking for ways to make the IEP meeting a more positive experience for everyone involved. Co-Sponsor: Families Helping Families of Acadiana Date: Friday, December 7, 2018 Time: 11:00 a.m. - 12:00 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Anatomy of an IEP - Like a biology student, this presentation will dissect the parts of the IEP document and examine their functions individually, learning their meanings and application. It will provide constructive and practical tips to help create an IEP that supports all of the student's needs. We will explore the parent’s role in the IEP process and learn the basics of their child’s right to special education services, the process of developing special education plans, and the parent’s role. Date: Friday, December 7, 2018 Time: 12:30 p.m. - 1:30 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Extended School Year (ESY) Services - Summer IEP Services - Did you know that data collected during the holidays often determine if your child will qualify for ESY Services? This training provides an overview of the ESY process for children with disabilities including how children qualify and why in many circumstances the school uses the holiday breaks in determining if a child will qualify for ESY. Co-Sponsor: Autism Society Bayou Date: Saturday, December 8, 2018 Time: 10:00 a.m. - 11:00 a.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. IEP versus 504 Plans - Students with disabilities will usually qualify for either an IEP or a 504 Plan, but what is the difference and is one better than the other? This training will take you through the eligibility process of both plans, the laws that regulate both, the differences in the plans and parental rights. Co-Sponsor: Families Helping Families of Northeast LA Date: Monday, December 10, 2018 Time: 11:30 a.m. - 12:30 p.m. Audience: Parents, Caregivers, and Professionals of School-Aged Children/Students. Getting and Keeping Your First Job - Getting and then keeping a job for someone with a disability can be tough. This training will go over why work is important, challenges for youth, the labor market, disability disclosure, accommodations and more. Co-Sponsor: Families Helping Families of Greater Baton Rouge Date: Monday, December 10, 2018 Time: 1:00 p.m. - 2:00 p.m. Audience: Parents, Caregivers, Transition Professionals, Adult Service Providers, Youth with Disabilities and Adults with Disabilities
D E C E M B E R 2 0 1 8
By Mary Jacob
My Twelve-Year Vacation
I can remember my youngest daughter Brooke telling me in 2006 when she graduated, “I think they just threw a party at school celebrating they will never have to deal with you again.” Some would be offended, but not me. I was honored they threw a party and didn’t invite me. Little did they know, I was throwing my own party for the same reason and didn’t invite them. That was 12 years ago. Fast forward to about six months or so ago I was having a conversation with my 6-year-old grandson, Liam, about something he did that reminded me of his mother. The next thing out of his mouth was, “Mimi, the apple doesn’t fall far from the tree.” I feel rather certain that he doesn’t understand the full magnitude of that statement, but he certainly knew the perfect time to use it and for the record, that apple didn’t fall very far from that tree at all. From the time my daughters were young, I knew I was raising them for the world. I instinctively knew the day would come where I had to push them out of the nest to fly. As much as I love my daughters, living with me forever wasn’t something I had planned on. Because their learning disabilities were on the mild end of the “big picture” of disabilities, I knew they would probably fall in love, get married and one day even have children. One of my biggest fears was the children part. As much as I dreamt of becoming a Mimi – I also feared the genetic possibility of my daughters giving birth to a child with learning challenges. Of course, there was no certainty this would even happen, but there was also no certainty that it wouldn’t. I would have done anything to prevent this from happening. The problem was – there wasn’t a thing I could do to stop it. As a mother, I didn’t want my children to go through what I went through. As a grandmother, I didn’t want my grandkids to go through what their moms experienced. In 2012, I was blessed with the greatest joys in my life to date, the birth of my precious grandchildren, Liam and Lily. Both daughters delivered healthy babies eight weeks apart and made me one happy Mimi. Both, just like their moms met normal developmental milestones. In true male fashion, Liam mastered walking, running and climbing on time while Lily, became a chatterbox like most girls. Eventually, they both became very active and talked so much to quote my mother, “they must have been vaccinated with a phonograph needle". Just like their moms, they both went to preschools and mastered the things preschoolers are supposed to master to be kindergarten ready. As the kindergarten year progressed, so did some red flags. Attention spans were lacking, mastery of certain ELA skills didn’t exist, but they both could have given Forrest Gump a run for his money on a track field. While both of their moms were very optimistic, Mimi, on the other hand, was witnessing a second verse, same as the first moment. My biggest fear was coming true right in front of my eyes. Is it possible that BOTH grandkids will have learning problems? This could not be happening. After accepting the likelihood of a repeat performance that I didn’t enjoy the first time, I realized that things were a little different though. The big difference was ME. I am an experienced parent. I have the financial ability to help if need. I lived years of thinking what would I have done differently in order to make school more successful for them. One of the things I said if I could do over again, it would have been to have my daughters tutored earlier. So with this knowledge and the fact that both of my daughters were eventually diagnosed with Dyslexia, I decided to spend this past summer driving back and forth to Louisiana Center for Dyslexia and Related Services at Nicholls State University in Thibodaux. I knew first hand that kids that can’t read or possess the necessary pre-reading skills will often become distracted. If the task is difficult, they avoid it, and I needed to know if this was a potential problem. Lily and I, as she likes to say, “went to college” over the summer where she was tutored. At the end of the summer, the tutor said that she didn’t suspect Lily had any issues with learning to read and felt pretty certain she didn’t have dyslexia. In fact, she thought she was exactly where she was supposed to be, if not advanced. However, she had great concerns about her attention span. She said, if she was in her class with 28 other kids, she wasn't sure what she'd do to keep her focused and on task. This was a huge relief that the dyslexia gene seemed not to be passed on to Lily. We still had to work around the lack of attention and her excess energy, but I felt this was a lot easier. My other daughter and son-in-law decided to relocate to the Northshore and they would utilize family for help. Liam was fortunate enough to have his Aunt Kristin, a teacher, who lived close by and capable of providing him with some summer tutoring. With Liam, we had to consider he spent his kindergarten year in a Spanish immersion program and we weren’t sure if he was truly having problems or if it was just lack of English instruction. Either way, I was determined these kiddos would be 1st grade ready. Here we go again….. August rolls around and both have their new spiffy uniforms, backpacks and are off to first grade. Liam would be starting his new school on the Northshore, while Lily would be returning to her school in St. Charles Parish – and just like their mom’s, both grandkids were diagnosed with ADHD in first grade, one in St. Charles Parish and the other in St. Tammany Parish. The “here we go again” roller coaster had officially taken off. I’m not even sure if I had time to put on my seatbelt before we were approaching the first hill. And just like their mom’s both were referred to a school team to determine if they needed interventions, 504 plans or even an IEP. I truly hate, loathe, and despise the idea that my grandchildren are going to be going through this same thing. I question if schools really have improved since my girls were young. I wonder if my daughters will have the same obstacles I had trying to get them an appropriate education. No one should have to beg for an appropriate education. No child should hate school and yet, this is what I heard on Thanksgiving day from my grandson. Twenty-seven years ago his mom also hated school. That dang apple, my grandson, really didn’t fall far from the tree. The good news is both St. Charles and St. Tammany Parishes seem to be doing everything they can to provide assistance. Lily is officially on a 504 plan and Liam is going through RTI interventions. They also have a fierce Mimi that will do anything in her power to make sure they get the support they need to be successful in school. So while I had a twelve-year vacation from personal advocacy, the vacation has officially come to an end. This really is happening again. So far now, this Mimi will patiently watch from the sidelines, but keep her armor close by in the event I’m called back into action.
Agents of Their Own Success: Self-Advocacy Skills and Self-Determination for Students with Disabilities in the Era of Personalized Learning This emphasis on student agency, self-awareness, and self-advocacy is important for all students, but especially for students with disabilities who will have to advocate more proactively for their needs in higher education, the workforce, and community life. Impacts of SSI on Other Government Programs Part of the Understanding Supplemental Security Income SSI And Other Government Programs — 2018 Edition, with information on Medicaid/Medicare, SNAP, TANF, health insurance for children, needs-based state and local assistance, SSI, etc. Social Security Disability SSI — Eligibility Requirements and Criteria to Qualify Part of the Social Security Disability SSI Resource Center Web page of Information, discusses what the Social Security Administration considers a disability that rules out a person’s ability to work and earn a livable income (as defined by the federal government). Law and Guidance Overview This page from the Department of Education provides links to legislation, regulations, guidance, and other policy documents for the Every Student Succeeds Act (ESSA) and other topics. The Individuals with Disabilities Education Act (IDEA) This is the home page for the official US Department of Education IDEA page. The Individuals with Disabilities Education Act (IDEA) is a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children. The Workforce and Innovation Opportunity Act (WIOA) The WIOA Resource Page provides information and resources for States, local areas, non-profits and other grantees, and other stakeholders to assist with implementation of the Act. This page is updated to reflect newly developed materials, including responses to frequently asked questions. Americans with Disabilities Act (ADA) The ADA website provides publications and videos that answer many questions, including: What is the ADA? Who is a person with a disability? Who must comply with the ADA? Where can you call to ask questions about the ADA? The Rehabilitation Act of 1973 This is the Department of Education’s page on the Rehabilitation Act as amended through P.L. 114–95, enacted December 10, 2015. A link to the law in pdf form is available. National Disability Rights Network (NDRN) The NDRN delivers state-of-the-art training, technical assistance and networking. Its Training & Advocacy Support Center (TASC) is designed to enhance the advocacy functions of the Protection & Advocacy agencies (P&As) and Client Assistance Programs (CAPs) in their efforts to protect the civil rights of persons with disabilities and prevent and/or remedy abuse and neglect of those who reside in institutions, other facilities and the community. SSI Law and Regulations Finder This Law and Regulations Finder is designed to assist you in quickly locating some of the most frequently used sections of the SSI Law and Regulations. Olmstead: Community Integration for Everyone The Olmstead decision details how public entities must provide community-based services to persons with disabilities when certain conditions are met. Rehabilitation Act of 1973 The Rehabilitation Act of 1973 prohibits discrimination on the basis of disability in programs conducted by federal agencies, in programs receiving federal financial assistance, in federal employment and in the employment practices of federal contractors.
Resources for FAMILIES & EDUCATORS
Graduation Pathways for Students with Disabilities
FREE
The Louisiana Department of Education is committed to helping families find the right school or early childhood center for their children, and providing them with helpful information about Louisiana’s schools. The Louisiana School Finder is an interactive, online tool that provides families with: school performance scores and early childhood performance ratings to show how well schools and centers are preparing students for the next grade-level; basic information about schools and centers such as their address, website, hours of operation, and principal or director’s name; and listings of course offerings, clubs, enrichment and extracurricular activities. To find out information about schools and early childhood centers in your area, visit www.louisianaschools.com, and type in a school or center’s name, or your zip code.
While most students with disabilities in Louisiana will pursue a traditional pathway to a high school diploma, certain students with disabilities who have an IEP have alternative pathways to a diploma available to them. Students at the high school level who are eligible under Act 833 (2014) can pursue a standard high school diploma by meeting standard graduation requirements through alternate means. Students at the high school level who are assessed on Louisiana Alternate Assessment Level 1 (LAA 1) can pursue a diploma pathway by meeting alternate requirements. Resources are available which can assist both educators and families in planning and implementing a successful high school experience for students with disabilities who have Individualized Education Programs (IEPs).
The Louisiana Parent Training and Information Center (LaPTIC) is a program of Families Helping Families of GNO and a grant from the US Department of Education; Office of Special Education (OSEP) as Louisiana's official and only statewide federally funded Parent Training and Information Center.
The following meetings will be held at Jefferson Parish Human Services Authority 1500 River Oaks Road, Suite 200, Harahan January 29, 2019 July 30, 2019
e-Learning Mini Modules are formatted for all devices so even if you are at a ball game, dance practice or waiting for your dinner to arrive in a restaurant, you can log onto our website and watch one of our e-Learning Mini Modules in approximately 10 minutes. That's right - you only need about 10 minutes! CLICK HERE to go to our website and learn more about the e-Learning Modules!
Any information provided by Families Helping Families of Greater New Orleans (FHF) and/or Louisiana Parent Training and Information Center (LaPTIC), its staff, and/or its volunteers is intended for informational and educational purposes only. Any information expressed or implied is not intended nor should be construed as legal, medical, or other professional advice. FHF and/or LaPTIC does not render legal, medical, or professional advice or recommendations; nor is legal, medical, or other professional advice implied by any information given. Any information provided should not replace consultations with qualified legal, educational, healthcare, or other professionals to meet individual or professional needs. Reference to any program, service, therapy, or treatment option does not imply endorsement by FHF and/or LaPTIC or by its organizational staff/members and should not be construed as such.
The Office for Citizens with Developmental Disabilities (OCDD) has four developmental disability home and community-based waivers, New Opportunities Waiver (NOW), Residential Options Waiver (ROW), Supports Waiver, and Children's Choice Waiver have now been operationalized to a tiered waiver system of service delivery, which will allow for individuals to be supported in the most appropriate waiver. To learn more, click here.
Regional Advisory Committee (RAC) Meetings
700 Hickory Avenue Harahan, LA 70123 504-888-9111 800-766-7736 504-353-2350 fax info@fhfofgno.org fhfofgno.org
Parents and Caretakers of individuals with developmental disabilities, individuals with developmental disabilities, and concerned citizens are invited to attend this meeting. All guest will have the opportunity to make public comments about developmental disability topics.
The following meetings will be held at Jefferson Parish Human Services Authority 5001 West Bank Expy., Room 118, Marrero April 30, 2019 October 29, 2019
