Florida SNAP Special Needs Newsletter- October 08

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OCTOBER

NEWSLETTER 2008 IN THIS ISSUE Parent Training Calendar Helpful Tools For Back To School Article on Federal Government Benefits and Entitlemtnes Focus On Family Feature Sibling Talk: When to discuss your childs diagnosis with their siblings Update on PFSS Grant Programs Trick Or Treating Tips OCTOBER CALENDAR Saturday, Oct. 4th Parents Of Multiples West Broward Club's GARAGE SALE 8 am - 11 am Plantation Community Center 5555 PalmTree Rd Click the link below to download the flyer to waive admission, get directions and learn more about the sale. http://www.floridasnap.com/19.html Sat. Oct 11th Support SNAP as panelists at the 29th Annual Disability Expo 10 am - 4 pm Ft. Lauderdale Fl Call us for details Wed. Oct. 15th 7pm, Sunrise FL SNAP Workshop "Oritntation to PFSS, Where There's A Will, There's A Way" Grant Program RSVP a Must. Call for details Mon. Oct. 27th 7 pm, Sunrise Fl SNAP Workshop "Addressing critical issues families with special needs loved ones face" Topics include: Benefits & Entitlemtnts, Guardianship Proceedings, Creating Letter Of Intent and more. RSVP A Must Fri. October 31st HAPPY HALLOWEEN!! Parents, Teachers, Support Groups, and PTA groups... Are you looking to bring free parent training workshops on site for members? We can provide quality parent training to help ensure the long term quality of life families with special needs loved

ones. Our workshops address topics from alternative housing, qualifying for benefits and entitlements, the ABC's of IEP's, The importance of Special Needs Trusts, Creating Your Letter Of Intent, Guardianship Proceedings and more. To schedule a workshop, call us at . In 2008, families with special need children may be eligible for grant subsidized and greatly reduced end of life documents including, Last Will and Testament, Living Wills, Health Care Proxies and

Minor and Testamentary Special Needs Trusts. For more information and to qualify please call us at and RSVP for our next orientation on October 15th at 7pm. SAFE Halloween Trick Or Treating Tips Consider Trick Or Treating at a local mall or shopping center. Store owners are usually stocked up for passers by and local shoppers. Going door to door may be dangerous depending on the area you live in and if it rains, an indoor mall is always a great place to be. Consider applying reflective tape to costumes and candy bags for greater visability. Remind children to only trick or treat at well lit homes and to NEVER go inside anyones house, garage or hallways. Make sure the kids have a good lunch and dinner and give them a little goodie bag to take along on their trick or treating adventure, so they aren't tempted to eat candy before you've had a chance to inspect it. Remind your children never to pet any animals they may encounter at a front door and if a pet is enclosed in a front yard or fence, consider skipping that house. Always carry a spare candy bag incase the one you go out with breaks! Make sure costumes are flame retardant and an appropriate length. Make sure your chils is appropriately dressed under their

costume. 1580 Sawgrass Corporate Parkway, Suite 130, Sunrise, Fl 33323 Office: Fax: www.FloridaSNAP.com E-mail: info@... From the Co-FoundersBack To SchoolHeading back to school is usually an exciting and overwhelming time. For some parents the excitement soon turns to frustration when getting their children and new teachers quickly acquainted doesn’t go a seamlessly as they’d hoped. To help facilitate getting your child the attention they need and the teachers the information on what works best for your child, we suggest using a form letter

entitled, “Letter For My Teacher, 15 Things You Should Know About Me” written by Jene Aviram, a parent of a special needs child and founder of Natural Learning Concepts (www.Nlconcepts.com). Jene’s template is a useful tool for parents looking to clearly define and highlight their childs individual strengths, weaknesses, likes, dislikes, triggers and more. Teachers who get a mini reference sheet with some insight on a new student will be able to facilitate a smoother transition into the school year, with a less phone calls and interruptions to the developing teacher student relationship. To get a copy of the template and to use "A Letter For My Teacher", click the following link and download it online. http://www.longislandsnap.com/27.html Did You Know? Federal Government Guidelines For most families the thought of needing a TRUST is only for Rockefellers and the very wealthy. What most of the families who come through our parent training courses learn, is that when dealing in the world of benefits and entitlements a mere $2,000 makes your loved one with special needs a “Rockefeller” in the eyes of the federal

government. Regardless of where you live and what your loved ones’ diagnosis is, if they are receiving benefits or entitlements or may become eligible for them at some point in the future, they could loose their status when any moneys or assets in their own name exceed $2,000. Consider these beneficiary designation pitfalls that may jeopardize your loved ones benefit eligibility and entitlements. Beneficiaries and contingent beneficiaries on your personally owned or life insurance from work. Your retirements accounts Anything named to them using a “blanket” provision like “all grandchildren equally” or “all children, nieces and nephews equally” In your wills or the wills of well intentioned family members If you are unsure of your beneficiary designations or if you use the $2,000 guideline limit and know your loved ones’ benefit

eligibility is in jeopardy, please call us for a one on one consultation. Remembers benefits and entitlements mean access to educational resources, respite care, adult day services when your child ages out of the school system and other services your money can’t buy. Benefit eligibility is critical to protect so be sure and secure as many entitlements for your special needs loved ones as soon as possible. Focus On Family Each month we hope to bring you personal stories of families we are working with in hopes of sharing their joys, struggles, experiences, and overall inspiring stories of raising a loved one with special needs. Seth’s Family Lynn, and their son Seth are an amazing family. Seth now 4 ½ was diagnosed with Cerebral Palsy at age 2 and since then has come a long way with therapies and continued support from school, family and friends. We had a chance to ask Lynn some questions about Life with Seth and here’s what she had to share with our subscribers. Question: Tell us about managing a busy schedule. As two working parents, how to do fit therapies, family fun and down time

in for both of you and Seth? Lynn : Morning time I get Seth ready and daddy takes him to school. Daddy picks up from school and we take turns in the evening. We have routines and roles which are helpful to running our household. Daddy always gives Seth his bath and it is a great time for them to spend together and bond. Keeping a schedule for therapies happens because of the folks who are involved in our support system of family and friends. Usually Seths’ grandma steps in and takes him to any extra activities that he needs to be taken to while and I are at work. His grandparents are very much a part of Seths’ life and he loves spending time with them, and luckily for us, they support our decision and efforts to

keep Seth involved in therapies outside of school. I like to be involved with all of Seths’ medical doctors and I try and make all doctor appointments on Friday, since I don't work that day. For us, weekends are for fun. and I both enjoy doing things together with Seth as a family and we try and take him different places that typical families would go, like the museum, Jungle Island , Miami Seaquarium, you name it. We also take many trips throughout the year to Orlando and of course Walt Disney World. Seth loves Disney and with his new power wheel chair, given to him by the Darrell Gwynn Foundation this year, getting around has been a bit easier for our growing boy! Fitting everything in is definetely a team effort, we seem to have it down to a science at this point and know how to prioritize and leave room for fun. As a general

rule of thumb, where one stops the other continues. It works well for us. As for our personal down time as a couple - What is that? Question: What are some of the Goals you have set for Seth out over this year, academically, socially, physically, emotionally? Lynn: We’d like him to be more independent and to learn to walk and feed himself, potty train, and do the normal everyday things that kids can do that right now Seth can't. Physically, Seth is very demanding and caring him for him isn’t always easy on me woth

a back condition of my own. As he gets older and heavier changing him, bathing him and just getting him in and out of the car can be difficult. We hope that with continued therapy and help from his teachers at school and what we work with him on at home, Seth will one day walk, feed himself and become more independent. We want him to learn to do those things himself! Seth has come a long way with his therapies and can maneuver his power wheelchair controls with his hand. This has given him some freedom and us some dents in the walls, so I guess it’s all coming together! Question: As a couple, do you have certain goals you have set for yourselves for this year as well? Lynn: Getting out of debt and trying to pay off some of our bills is a definite priority. Justs like any couple we have things we’d like to do and dreams for us and for Seth. As long as and I continue to support each other in our roles as parents, we can accomplish anything. We recently came together with SNAP to put together our wills, special needs trust and insurance plans in place. We always knew it was something we had to do, but learning what was right for us, where to start and how to make it happen without major interruption to our schedule and lives wasn’t easy to find. Now that it is done, we feel a huge relief. We feel better knowing that even if we weren’t here for Seth, the things we want for him and the level of care we want him to have will now be in place. Question: Who are some of the key people that support you in your role as parents? Lynn: Family is important, Seth's grandparents are the best, they are 100% behind us and help us in any way they can. We also have great therapist, Jen Stein, who's worked with Seth since his birth and together have formed a bond and made great progress. Jen is like on of the family and Seth loved her very much. Pediatric Therapy Associates are also on our list of helping hands for Seth’s care, Seth has been going to them since he was little and they've seen him grow up and improve and they are wonderful and

kind and sincerely looking to help families and individuals with special needs. We also have an amazing group of friends as well who are behind us and are very supportive. Question: Any specific advice or words of wisdom for families with children who have been diagnosed with CP? Or for parents in general? Lynn : Lots of patience! Lots of hard work and determination. And, above all - never, never, never give up!!!! And last but not least LOVE!! Sibling Talk Recently we met with a family who has 5 yr old twins. One twin has been diagnosed on the Autism Spectrum and recently the parents have been wondering when's the best time to talk to their son about his sisters diagnosis? From the time the twins were born, they have done everything together, play dates, trips, family fun and even trips to

the dentist. Now with new therapies, evaluations and other appointments in the calendar for their daughter, their son wants to know why he isn’t seeing Dr. or going with her on outings when she's busy with therapy and other activities. Our advice to them was simple - teach your children that everyone is unique and different, even twins as close as the two of them. Show them how everyone is individual, everyone looks a little different, has different ways they learn, has different things that they enjoy, are good at or may need help with. Then use examples of them in their every day life to show similarities along with

their differences without any negative connotation to them. As the children get older, parents have to gauge when they feel the siblings are emotionally able to comprehend and understand the diagnosis without feeling afraid or overwhelmed by it and can then have the conversation with them. When did you tell your typically developing children about their brother or sisters diagnosis? Did you use childrens books, seek the help of therapists, maybe you did not mention it at all? Whatever

you did we are interested in your thoughts about when to talk to siblings about diagnosis. If you want to share your story with us, please e-mail us at infoFloridaSNAPlcom (DOT) Your story can help many of our families, new to a disgnosis share the facts with their children in a safe, and approachable way. © 2008 SN Advisory Partners Inc. This message was sent from Florida SNAP to deniseslist@.... It was sent from: SNAP/PFSS, 1580 Sawgrass Corporate Parkway, Suite 130, , Sunrise, Fl 33323. You can modify/update your subscription via the link below. Manage your subscription