Florida SNAP: December Special Needs Newsletter - Holiday Tips!

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Florida SNAP wrote: Special Needs Holiday Newsletter December 2008 The Special Needs Advisory Partners & The Preventive Family Support Services *www.LongIslandSNAP.com * * 1580 Sawgrass Corporate Parkway, SUite 130, Sunrise, FL 33323 E-mail: info@... In This Issue Holiday Message from the founders Holiday Tips for families with special needs loved ones Focus On Family Spotlights "Widmarck and Wideleyne" "Where There's A Will, There's A Way" Grant Update Gluten Free chocolate chip recipie from Alton Brown on the Food Network A Special Thanks Borella's Farm We wanted to mention the amazing folks at Borellas Farms in St. , NY. This year they collaborated with SNAP in offering over 1,000 FREE pumpkins, gourds and hay bails to schools, support groups and agencies who distributed them to children with special needs. From Long Island to the Bronx, Queens and Westchester, their generosity helped make this harvest season bright. Thank you to the family and friends at Borella's Farm. Be sure and visit them and support their farm every year. Borella's Farm 485 Edgewood Ave., St. , NY Thankfully with grants received by the Preventive Family Support Services from SNAP and other private foundations our grant

subsidy program “Where There’s A Will, There’s A Way” is moving toward a close on our program goals. The grant program helped eligible families who attended PFSS parent training courses to receive financial assistance to secure their Wills, Testamentary Special Needs Trusts, Minor Trusts, Health Care Proxies and Durable Powers of Attorney. Colette Cronin, Grant Coordinator said many families who came through the training assumed because they were from lower to middle income class that they didn’t need a will or any planning because they didn’t have any money. What they learned about securing benefit eligibility and the importance of choosing a guardian for their loved ones by electing that person legally through their Last Will and Testament

was life changing. For the families who knew they needed the help because their income and assets already bumped them out of certain programs and benefits, they too learned the importance of protection and preservation of future benefits and entitlements as their loved one reached the age of majority. Many middle to upper level earning families had no idea that by leaving more then $2,000 in their childs name via a beneficiary designation could create trouble down the road and jeopardize the benefits that their loved ones will rely on that money can’t buy, such as a seat at a certain adult day program and respite care services. After conducting a short survey of randomly selected families whop participated, it became clear that the families who came through the parent training most appreciated the creation of the Letter of Intent and the professionally moderated and facilitated round table discussions addressing their special needs loved ones long term quality of life. Thoughtfully discussing and strategizing how to deal with issues like dating, sexuality, alternative housing, and life for their loved one as they aged helped get guardians and family members on board and clearly defined the roles and responsibilities they would have to play in their special needs family members life if mom and dad weren’t here to provide care for them. The grant was funded to subsidize families with special needs children and adults who have a formal diagnosis and as we move into the last month of this year, and a limited number of slots

are left, a final call to action is going out to the families, support groups, msc’s, doctors, therapists, teachers and support groups for families with special needs loved ones to inquire about securing their placement in the program. For more information and to schedule an intake and training session, please call the Preventive Family Support Services main number at . If you have attended our parent training workshops and have completed an orientation and have yet to secure your placement in the grant program, you are encouraged to call your intake coordinator before the end of the year, or call our main number for assistance. The Preventive Family Support Services is a 501c3 not-for-profit organization and is a division of the Special Needs Advisory Partners Inc. dedicated to parent training and advocacy. Holiday Message A Holiday Wish... We want to thank each family, friend, resource and supporter of our agency. Without your collaborative hard work and dedication to serve those in the special needs community we couldn't help as many families as we do. We wish you a blessed holiday season and a new year full of hope, joy and renewed faith. Sincerely, , J.

Philipp, Tara R. Lynch & your friends at PFSS & SNAP Parent Training PFSS is dedicated to parent training. To schedule a workshop for your school, support group, PTA or other local organization helping families with special needs loved ones', invite us to present our free trainingss on site. Visit our website at www.FLoridaSNAP.com for a complete list of our parent training workshops and call to schedule one today. Holiday Tips For families with special needs children preparing for the holidays can be a daunting task. For some special needs loved nes’ the disrupting schedule, time off from school, constant noise, new smells, surroundings and invited guests can be very hard to deal with. To help your child enjoy the holidays to the best of their ability, we asked our families for some tips on how to best prepare themselves, their home and their guests this season. Here are our top five. 1) If you are traveling, calling an airline or hotel ahead of time and explain that you are traveling with a disabled loved one who may have sensory concerns or other areas of concern. Alerting these places may help you get in line first, or be kept up to date on delays and

variables that may effect your flights, waiting times, the location of your reserved room (ex: near a noisy ice machine or near the hotel pool) and help your special needs loved one and whole family travel more comfortably. 2) If you are decorating your house and moving furniture or putting up new surroundings, consider showing your special needs loved ones what this tradition is about by using pictures of a Christmas tree, people decorating, and menorahs. Using picture story boards before actually transforming their environment into a winter wonderland may help ease them into the changed look of their comfortable and familiar environment. 3) Be aware of sensory triggers when invited guests come to visit and spread some cheer. You know your child best. Prepare guests not to wear perfumes, buy noisy toys as

gifts, or insist on hugs or other requests from your child that they may not be comfortable with. 4) Many parents with special needs children get the call from well intentioned family members wondering what to get for little this year. Because of some uncertainty and confusion on what works well, they may just say to you, ‘be a dear and pick something up he would like”. That request along with the 500 other things you have to do this holiday season doesn’t seem like much of a gift! Consider having a list of things you child could benefit from books, storyboards, and other toys they enjoy. As we all know play time isn’t always play time, it is meeting your goal

time, reinforcing positive behavior time and rewarding time for your childs hard work all year long in therapy, in school and working with mom and dad at home. 5) Get everyone involved! Don’t let chores, wrapping, gift giving and the spirit of the season take a sideline because it seems over whelming. With some planning and all hands on deck at your family home, the season can be a joyous time to celebrate and be thankful for the many wonderful gifts you get to enjoy in life. Focus on Family Each month we bring our subscribers stories and interviews from the families working with our agency. Their commitment, dedication and love for their special needs children help inspire and encourage other families in similar situations. This month we present "Widmarck". Widmarck is a very cute and playful little boy. At age 7, he attends the Brazer School for Autism and lives at home with his mom, dad and sister Widelyne. Widmarck was diagnosed with Autism Spectrum Disorder at 26 months, for the most part he is non verbal, but says a few words here and there and loves to jump and bounce on his trampoline. His mom and sister wanted to share

with our subscribers what life with Widmarck is like from their perspectives. This is their interview. Q: Tell us about a typical day in your household: A: I am up at 5:30 a.m. to prepare breakfast and lunch.

Widmarck is on the GFCF diet so I have to make sure that I prepare meals that are appropriate for him. Widmarck is usually up by this time also. While I am getting lunch bags ready, my husband is getting Widmarck ready for breakfast. He does not like to brush his teeth, so that is a struggle for us in the morning. He eats before he gets dressed so he won’t get his school clothes dirty. My husband gives him his supplements and vitamins right after he eats. By six, I start getting myself ready for work. Widelyne is usually up by 6:45 . My husband gets the kids to school in the morning. After school, I pick up Widelyne and my husband gets Widmarck. The evenings include getting dinner ready, any scheduled therapy, and doing homework

together. It is best for our son if we try to keep the routines consistent. One thing we do every night before putting the kids to bed is pray as a family. To help Widmarck wind down, he likes it if I do massages for him along with other quiet sensory activity, this really helps him become calm and relaxed. Q: Who are some of the people in your life who support you in your role as a parent? A: Family is important to us and one thing my husband and I know is that we must strengthen each other because it can be difficult at times to find

time for ourselves. My husband is a great support to me and our family. Outside of the home, places like The Center for Autism & Related Disabilities, agencies like SNAP and the helping hands at our local respite care in the community are a great help to aide us in our parenting of Widmarck. Q: Do you ever feel overwhelmed by the thought of raising your child? If so, what to do you do to cope with those feelings? A: It is a daily challenge raising a child with special needs. I share my concerns and joy with my husband. I find renewed strength and hope in

prayers and reading the Bible. I know my son is a gift and I know he has a purpose in this life and each and every day we strive to give him the best and help him be the best he can be. Staying positive about all situations is rooted in my faith and confidence that God is in control. Q: Tell us about the joy and the love your child brings to you and your life? A: As a family, we feel connected to

Widmarck in many ways. He loves being with us, he shows this by hugging, smiling, and sometimes he tries to verbalize his love for us. For instance, he will say “mama” stroke my hair and babble something, and I reply by saying “ I love you Widmarck.” Q: What are some of your sons interests, strengths, likes, dislikes? Include foods, movies, activities, music and people. A: Lately, it is all about balls. He likes to watch car racing and Super Readers on PBS. He loves his sister and playing and joking with her is a highlight for

him. Although he doesn’t communicate exactly how typical children do, he has his preferences and often makes them known! Q: Tell us about your child over the years, what are some of the hardest things you had to go through or that you are dealing with on an every day basis? A: The biggest challenge right now is dealing with Widmarck’s behavior. It has been extremely hard to provide intensive behavior therapy for him due to financial hardship. He is still nonverbal. Not being able to express his needs and wants result

in behavioral outburst. With this question alone, I can write a book about the experiences we have had even before Widmarck was diagnosed with Autism. The journey has not been easy but through it all, God has put some amazing people on our path and overtime he will have the resources and therapies he needs to get to his potential. Q: What are some of the goals you have set out for your child over the next year or two that you’d like to see him work toward or accomplish? Can include maintaining something he is doing now that you hope he can continue to do into his future. 1. I would like for him to maintain and become completely independent at self-care. 2. For him to have the professional support to learn

how to use an augmentative device as a true learning tool to communicate in his surroundings. As your child gets older, do you feel confident you will be able to continue to meet his needs as a caregiver in your home? And is alternative housing in a group home or other ever an option for you to consider? My husband and I have discussed other options for Widmarck as he gets older. We feel it will be best for him to have a transitional plan ready as soon as he is an adult. Q: What are some of the things you have set out for yourself as

a parent and an individual that you are working on? A: I would like to start exercising. Learn how to manage time and responsibilities of home and work in order to make time for volunteering. Q: What words of wisdom can you give to single parents who are… Just starting out with a new diagnosis: A: Register with CARD, find a support group, go to parent training workshops, and conferences, join a support group, find respite care for your child, and find a prayer group. An Interview With Widelyne, Widmarcks

sister: Q: Tell us about the things you and your brother have in common? A: We both love chocolate, like to swim and sleep with mommy and daddy. Q: Do you know a lot about your brothers diagnosis of Autism Spectrum Disorder? A: Autism affects his speech, how he interacts with people, and the way he plays. Q: Where have you learned about Autism? A: I have learned about Autism from my mom, and from meetings that I have gone to with her. Q: Have you ever met anyone else with a brother or sister like yours? Yes If yes, what was that like, what did you have in common? If not, would you like to meet other kids whose families understand and live with someone on the spectrum? A: Yes, We were both home schooled. Her brother was the same age as my brother. It was nice getting to meet someone who had things in common with me. Q: Tell us about your relationship with your brother, do you get along, do you take care of him, does he make you laugh and have fun together? A: Oh yes, he is a comedian. When he takes my things from my room, he hides them under his bed when he hears me coming. We joke around and have fun together a lot. Sometimes he gets upset and I try and calm him down and be there for him. Q: What do you want to be when you grow up? Would you ever consider working at a career helping children or adults with Autism? A: I want to become a pediatrician. I am sure as a pediatrician, I will work with kids with special needs but I have not thought about it much yet. Q: Tell us about your time with mom and dad, do you get to spend alone time with them one on one and get special attention? A: I do spend time with my parents. I like going to the library with my father. He takes me to piano practice. I enjoy going shopping with my mom

and visiting my cousins. Q: What are some of the things you do when you get upset or worried or mad at your brother? A: I don’t like when he hugs me while I am mad at him. But we don’t stay mad for a long time, I have to be patient and understand that sometimes things for him are difficult and usually after a little while we are back to playing and joking around together. Q: What do you want other brothers and sisters who have siblings with special needs to know? A: To have patience and love them no matter what. To find ways to play with them that can be enjoyable for everyone. Even though they have a disability, they can still be really fun to play with. HOLIDAY RECIPIE Gluten Free Chocolate Chip Cookies Alton Brown on the Food Network 8 ounces unsalted butter 11 ounces brown rice flour, approximately 2 cups 1 1/4 ounces cornstarch, approximately 1/4 cup 1 teaspoon kosher salt 1 teaspoon baking soda 2 ounces sugar, approx 1/4 cup 10 ounces light brown sugar, approx 1 1/4 cups 1 whole egg 1 egg yolk 2 tablespoons whole milk 1/2 teaspoons vanilla extract 12 ounces semisweet chocolate chips Directions Preheat the oven to 375 degrees F. Melt the butter in a heavy-bottom medium saucepan over low heat. Once melted, pour into the bowl of a stand mixer. In a medium bowl, sift together the rice flour, cornstarch, tapioca flour, xantham gum, salt and baking soda. Set aside. Add both of the sugars to the bowl with the butter and using the paddle attachment, cream together on medium speed for 1 minute. Add the whole egg, egg yolk, milk and vanilla extract and mix until well combined. Slowly incorporate

the flour mixture until thoroughly combined. Add the chocolate chips and stir to combine. Chill the dough in the refrigerator until firm, approximately 1 hour. Shape the dough into 2-ounce balls and place on parchment-lined baking sheets, 6 cookies per sheet. Bake for 14 minutes, rotating the pans after 7 minutes for even baking. Remove from the oven and cool the cookies on the pans for 2 minutes. Move the cookies to a wire rack and cool completely. Store cooked cookies in an airtight container. 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