Monthly Archives: June 2014

So Many Special Needs Vacation Spots. Who knew?

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Best Special Needs Vacation Spots
Anyone who has organized a trip for the whole family knows how much time and effort it takes. But if you’re the parent of a special needs child, you can pretty much double or triple that figure. So much preparation is required that getting out of the house, reaching your destination successfully and still managing to have a good time could be considered a small miracle. Nevertheless, families do it every day — and have the time of their lives, over and over again.

It’s important to have a system, call ahead and expect the unexpected. But it also helps to choose a destination that “gets it.” Thanks to the Americans with Disabilities Act, passed in 1990, public buildings have been equipped with ramps, elevators and restrooms that accommodate people in wheelchairs. But when it comes to the serious business of having fun, vacation destinations need to go way beyond the minimum legal requirements.

Parents with children on the autism spectrum are looking for places that are full of things to see and do, while maintaining a sense of order and calm. Barbara Streett, a professional writer and mother of three in San Francisco, whose oldest son is autistic, takes her family camping, to the beach and has visited Utah, Florida and Hawaii. Through the years she’s noticed an increasing awareness of service providers and fellow travelers, feeling that this has helped smooth things out for her family. “You see a lot more accommodation and understanding than you did 10 years ago,” she says.

With food allergies and intolerances on the rise, families often need make special requests when dining out, too. Chefs may need to accommodate people with allergies and dietary needs, such as gluten-free or peanut-free, creating new delicious dishes.

“Preparation for Disney World begins well before departure,” says Melissa Chelist of Chesterfield, Mo., whose daughter has a severe peanut allergy. “Once we’ve informed the airline we get on the phone with the head chef; all the Disney resorts have one. We need to find out which restaurants are safe and which to avoid.”

For children with wheelchairs, you need information in advance for airlines, hotels, homes, restaurants and attractions. In addition, finding resorts and programs that offer adaptive sports and activities is a huge bonus.

For Karin Sheets, founder of Special Needs Travel Mom Blog, calling ahead and checking off the “special needs” box when booking a flight helps her family and daughter who uses a wheelchair, feel like VIPs. “We had no idea what to expect, but the staff took all of our stuff through security and all I had to do was take care of my daughter,” she said. “They helped me to the gate and even helped me install the car seat on the plane.”

Parents like Streett and Sheets have destinations selected after years of trial and error. But for parents who are just beginning to travel with their children or those seeking new adventures, there are certain destinations that pay special attention to special needs and are worth noting.

SUMMER FUN
Shared Adventures, Santa Cruz, Calif.
Santa Cruz is a well-known summer spot because of its Beach Boardwalk and gorgeous beach location. But it is also home to Shared Adventures, a non-profit organization that puts on an impressive array of programs through the summer for special needs children and adults. In July they host an annual Day on the Beach, which offers adaptive or assisted kayaking, canoe rides, scuba diving and flotation for people of all ages. Volunteers erect plywood “paths” for wheelchair access; you can also rent beach wheelchairs. The day ends with live music and free food. The organization also holds year-round activities and events. Visit the Shared Adventures Web site for more information.

Club Getaway, Berkshires
Club Getaway in Kent, Connecticut, part of the Berkshires, is touted as a convenient getaway for urban dwellers in the tri-state area (NY/NJ/CT). The setting is beautiful and there are lots of things to do. For Elizabeth Pflaum, a certified parent coach and mother to an autistic son, it’s a haven of rest. “It’s safe, relaxing and not overly stimulating,” she says. Families stay in rustic cabins with fully modern amenities. Families can kayak or try out the flying trapeze over the lake. Special Parents & Kids Getaway programs occur in August.

Splore, Moab, Utah
Splore is a not-for-profit in Moab, Utah that provides outdoor activities for special needs children and adults at affordable prices. They organize river trips, rock climbing and hiking through a partnership with Red Cliffs Lodge. More of a resort than a hotel, Red Cliffs Lodge offers an impressive variety of accommodations and activities. Four wheeling, river riding, horseback riding, mountain biking, scenic flights and hiking are all within 10 minutes of the lodge and most are adaptive for special needs. There are wheelchair-accessible rooms adjacent to the lodge. Sidewalks with ramps lead to all patios and to the museum. And while meals are “traditional cowboy fare,” the chefs can rustle up special menus upon request. Utah itself prides itself on offering accessible recreation. The Utah Office of Tourism released “Accessible Utah,” a guide to the places, organizations and activities that cater to special needs travel.

Cruises
Royal Caribbean became the first cruise line to be certified as “autism friendly” in 2014 and now families with special needs can sail the seas, too. The cruise line will provide sensory-related toys, Autism-friendly movies and modified kids programs for those with disabilities. Plus, dining on the ship will be easier for those with dietary restrictions as the cruise line pledges to offer more meal options, including gluten-free and intolerant options. The crew on the ships are required to be certified and trained in autism awareness and some staff will have hands-on training that will help with assisting those with special needs on the ships even more. And cruises are great for families as they have a plethora of activities, with something to suit everyone.

WINTER SKIING
Mont Tremblant, Quebec
Although Cara Brown’s middle child has global developmental delay, she nevertheless looks for vacation spots that work for her whole family. “We just kind of make it work, no matter what,” Brown says. Every member of the family is an avid skier, so the Browns’ annual trip to Mont Tremblant is a must. Located near Montreal, Mont Tremblant offers 95 runs serviced by 14 lifts. Besides skiing, winter activities also include snowmobiling, sleigh riding, ice-skating, dog sledding and ice fishing. Private ski lessons are available and many of the instructors are experienced in working with special needs children. For wheelchair users, Mt. Tremblant offers sit skiing, a sled-like platform guided by a second skier to negotiate a ski slope or trail. No reservations are necessary. It’s easy to get around, too — rooms are all ADA accessible and are generously sized for wheelchair maneuverability. Parents of children with allergies can request special meals at any of the resort’s restaurants. Every menu lists the ingredients in each dish and amendments are made cheerfully.

Colorado Ski Resorts
Skiers in Colorado have a lot of choices when it comes to adaptive ski programs. The Breckenridge Ski Resorts offer lessons for alpine skiing, snowboarding and cross-country skiing at Beaver Creek, Breckenridge, Keystone and Vail. Families need to call ahead for schedules and availability. The Breckenridge Outdoor Education Center provides lessons in all types of adaptive skiing at Copper Mountain Resort; the fee includes one-on-one instruction, specialized equipment and lift ticket.

Park City Resort, Utah
Meanwhile back in Utah, great skiing awaits at a number of resorts and lodges. Park City Resort is one of the biggest ski destinations in Utah; and according to Barb Likos, a professional writer and mother to a wheelchair-using son, it is also the best for catering to physical disabilities. “The resort works in tandem with the National Ability Center to make adaptive skiing part of a whole family experience,” she explains. Once when the resort’s newest tube lift could not accommodate her son’s wheelchair, the staff insisted on towing him up via snowmobile each time. Later, Likos found out they revamped the lift with a rubber and wood platform so that disabled tubers could sit on their tubes on the way up the lift.

AMUSEMENT PARKS
Dollywood, Gatlinburg, TN
When Tara Kline-Kennedy of Shoemakersville, Pa., took her two boys to Dollywood, they loved it — especially her youngest, who is autistic. “He loved the calmness of it even though it was a theme park,” she recalls. “In addition to the great shows and exhibits, there were tons of rides he could enjoy, even at his small size.” Dollywood is located within Tennessee’s Smoky Mountains and has a rural feel, with lots of trees and natural creeks running through it. Guest Services provides families with information on each ride and whether or not it’s appropriate for kids with special needs. The park adapted two of its attractions — River Battle, a water ride with boats and Adventure Mountain, the largest ropes course in the country — to accept wheelchairs. They also modified the Barnstormer, a swing ride, with seats that non-ambulatory children can access.

Morgan’s Wonderland, San Antonio, Texas
One of childhood’s most cherished sensations is that of flying through the air on a swing. This is something many disabled children never experienced — until Morgan’s Wonderland came along. Billed as the world’s first Ultra Accessible Family Fun Park, this playland in San Antonio offers 30 traditional, adaptive and wheelchair swings along with many other rides and activities. A lake is stocked with fish for catch-and-release fun. Artists perform at an amphitheater with flat levels for wheelchairs. Visitors with special needs get free admission, too.

RESORT TRAVEL
The nice thing about resort travel is that ideally, everything from lodging to dining to activities is in one easy-to-reach place. But just because a resort is advertised as having “something for everyone,” doesn’t mean it will have even the basics for special needs families.

Lucy Cusick, whose son has cerebral palsy and is in a wheelchair, looks for resorts that offer accessible taxi service for their offsite activities. But she has an entire “wish list” for a truly special needs-friendly resort. “I would look for poolside tables with plenty of shade; restaurants with tables that aren’t too close together; paved walkways to the beach; family, or unisex, restrooms in the public spaces; and of course the ultimate: a pool chairlift,” she says.

Smugglers’ Notch, VT
Smugglers’ Notch is an overall winner for family fun, providing a heady combination of pools (eight in total, plus four waterslides), camps (including special interest camps like tennis), and mountainside condos with full kitchens and one to three bedrooms. But what truly makes it shine is its SNAP program (Smugglers’ Notch Adaptive Program) which offers nine adaptive activities including swimming, hiking and horseback riding. The resort also has an inclusion program to help integrate children with special needs into group activities. Be sure to call ahead for reservations.

Franklyn D. Resort & Spa
All-inclusive resorts are great for every family looking to save some money, but the Franklyn D. Resort & Spa offers a few extras for families with special needs. The Jamaica resort offers up to 50 percent off rates year-round for families traveling with children with special needs. Plus the resort provides every family with a personal, professionally trained Vacation Nanny. Parents will feel safe knowing the resort has trained staff to help their family have an even better time on the island and they won’t feel like their breaking the bank with the discount and the all-inclusive amenities.

Great Wolf Lodge, Nationwide
With 11 locations across North America and a 12th soon to open in California, Great Wolf Lodge is like an exotic destination within (or at least close to) your own backyard. Famous for its giant indoor water parks and rustic-themed rooms with kid caves, this family-friendly resort is a favorite destination for 4 million visitors every year. Best news of all for special-needs families is that besides being fully ADA compliant in their accommodations, Great Wolf Lodge also offers “zero entry” pools at most of their locations and in the water parks. The company is also planning to install chairlifts in the pools without zero entry within the next few years, notes senior communications manager Bethany Perkins. “Nearly any kind of special accommodation will be made for visitors if we just have some advance notice,” she says. “I know for a fact that the chefs welcome special menu requests, because it allows them to get creative.”

Disney Resorts
Of course, it’s hard to beat the Disney resorts in pretty much any category, and catering to special needs children is one of them. Although the parks, which include Disneyland, Walt Disney World, Epcot Center and California Adventure are full of crowds, bustle and activity, they all manage to personalize service for families with special needs. When Melissa Chelist first brought her daughter to Goofy’s Diner at Disney World, she made a reservation months in advance, notified the chef of Leah’s peanut allergy, and then called again on the eve of their dinner.

“The chef came out and told Leah she could have anything she wanted to eat,” Chelist says. “Leah looked at him with her big blue eyes and rattled off her menu of choice. The chef then informed us that they had purchased all new pots, pans and utensils just for our meal. We were so overwhelmed with this generosity we’ve told the story many times.”

The Disney hotels near the theme parks have a special reservation form that allows visitors to request anything from roll-in showers to double-rinsed linens. For Sheets, it was Disney’s Yacht Club Resort that really catered to her families needs. “There were no microwaves and we needed one for our daughter, so we asked at the front desk,” she said. “Even though they weren’t in the rooms, they had them in the back! All you have to do is ask!”

The theme parks offer guides that show mobility requirements for each ride, too. And don’t forget to ask about designated viewing spots along parade routes and shows!

Wyndham Hotels
The Wyndham chain of hotels strives to be sensitive to guests with special needs. The Wyndham Westshore, for example, was designated Tampa’s first “Autism-Friendly” hotel. The staff has been trained by the Center for Autism & Related Disabilities at the University of South Florida. Since autistic children often respond better to places they are familiar with, a kit is available that offers stories about the hotel and various “comfort items.” Another great property is the Wyndham Garden Hotel in Austin, Texas, offering five standard rooms with an extra double bed — at a discount — to families with an autistic child. The rooms are equipped with safety features such as shortened blind cords, corner guard cushions and outlet covers. The restaurant offers a “Thoughtful” menu that contains items free of casein, gluten and soy. Staff has been trained in autism awareness.

Carlson Hotels
Better known as Country Inns & Suites, the kids will love their complimentary “Short Stature Kit” at Carlson Hotels. The kit made with little people in mind, consists of a stool, closet rod adaptor, “poke ‘n pull” stick and a grabber tool, making it ideal for wheelchair users as well. “I wish that kit was in every hotel,” says Kelly Rouba of Hamilton, N.J., and the author of “Juvenile Arthritis: The Ultimate Teen Guide.” Rouba also suggests asking for a roll-in shower for wheelchair users.

When it comes to hotels or resorts, Gina Badalaty, founder of the Mom Blog, says any place with a pool helps her two daughters — both with special needs and diets — have fun. “I think any vacation that involved lots of swimming is great if your child is physically able to,” she says. “Water seems to be a great leveler. I feel like when they are swimming they are no different than any other child.”

As time goes on there will be less reason for families with special-needs children to forego fun vacations. “Some families may isolate themselves, sacrificing family gatherings, holidays and vacations because they don’t know how to set the stage for a stress-free time,” says Dr. Caroline Eggerding, vice president of medical services for Bancroft, a New Jersey-based company that provides programs for children and adults with disabilities. “It’s not a simple task, but it can be accomplished if you accept, adapt and stay flexible.”

Thanks to parents and families who didn’t let anything stop them from finding ways to make their trips enjoyable and vacation destinations all over the country (and the world) who have listened and adapted.

http://www.familyvacationcritic.com/best-special-needs-vacation-spots/art/

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Is Your Child Involved? Mine is!

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My son has had a great experience being involved in special Olympics bowling! He is very proud of his gold medals! Here is some more information about this organization.

What is the Special Olympics?
Special Olympics Who We AreThe mission of Special Olympics is to provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community.

History of the Special Olympics
In the 1950s and 60s, Eunice Kennedy Shriver saw a need in the community. People with intellectual disabilities were not being treated fairly. They certainly did not have a place to play. To combat this, she held a summer day camp for young people with intellectual disabilities in her own backyard.
The goal was to learn what these children could do in sports and other activities – and not dwell on what they could not do. In July of 1968, after years of hard work, the first International Special Olympics Summer Games were held at Soldier Field in Chicago, Illinois, USA. A thousand people with intellectual disabilities from 26 U.S. states and Canada compete in track and field and swimming.

For a full timeline of the Special Olympics, please visit SpecialOlympics.org/history.
The Special Olympics Today: By the Numbers
Offers 32 Olympic-style individual and team sports
Over 4.2 million Special Olympic athletes served –ages 8 years old and up
Over 70,278 competitions
Training takes place 365 days a year in over 170 countries
220 worldwide locations
Over 100 international corporate partners, including FIFA, ESPN, and UNICEF
Over 741 Clinics and 106,427 athlete screenings as a part of the Sustaining Athlete Health program

A Special Olympics Story
In every corner of the earth, Special Olympics is changing the lives of people with intellectual disabilities. The story section on the Special Olympics website shares stories that come from all around the world. There are hundreds of stories here showing newsworthy items in the Special Olympics community, from families sharing their triumphs to volunteers sharing their side of the organization. One story about Laurentin Zelko caught my eye:
laurentinWhen Laurentin was born, the doctors told his parents they should leave him because he was not worth anything. But Laurentin’s parents loved their child. Laurentin did not learn to walk until he was four and at age five he spoke his first word, “mama”.

Eventually they found Special Olympics. “Special Olympics is our life. It has given me strength and confidence and made us so proud.” Not only has Special Olympics sport provided many opportunities for Laurentin, but through Healthy Athletes, it was discovered that Laurentin had a severe hearing problem.
The doctor who saw Laurentin at Healthy Athletes Healthy Hearing told him to come see her at the hospital in Bucharest for treatment, and now Laurentin is able to hear and is not longer in pain. Prescription glasses were also given to Laurentin at Opening Eyes.“We are so grateful for Special Olympics,” says Alexandru “it has been a challenging journey, and Special Olympics has greatly improved the health and well-being of our son.”

Find a local chapter of Special Olympics or to get involved!

http://www.friendshipcircle.org/blog/2014/06/16/special-needs-organization-of-the-month-special-olympics/

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7 Tips for Navigating the Path of Child with Special Needs

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If it were up to me, parents who have a child with special needs would automatically win lotteries to enable them to exclusively devote their time and energy to navigate the uncharted waters of their child’s special need’s world.
But until Congress passes the “lottery ticket bill”, here are some tips to make navigating your individual child’s path more efficient and effective.
1. See who is a few steps ahead
Due to the individual nature of special needs there is a lot of research we have to custom make. However, there is also a great deal of information that we can get from parents in similar situations. Ask your child’s therapists or principal if they can connect you with a parent whose child is similar to yours, just a few years older. While situations are as unique as our fingerprints, experience is a good teacher and most parents will be glad to share their hard earned wisdom with you.
2. Help those a few steps behind you
The Torah tells us it’s a mitzvah, and research tells us that altruism is good for our health, so if you see a child similar to your own at therapy or at pick up, ask if they would like to compare notes. You may think that everyone knows where the best horseback therapy is or that Nordstrom sells different size shoes, but that nugget of information may be saving that mom precious money and aggravation.
3. Join support groups
Your time and energy is spread thin, yet it is vital to take time to sharpen the saw. Online forums are a few clicks away for the most common and unique situations. Even logging in for a few minutes here and there will give you some hard earned emotional support and practical tips. Besides from boosting your spirits these forums are better than Google itself in giving ‘been there, done that’ advice. Google or check Facebook for groups that work for you.
4. Google different scholarships
While googling your child’s symptoms may slowly turn you insane, googling for scholarships might help lighten the load. There are a variety of scholarships for tuition, dental care and summer camps and more. Give yourself a recurring slot once a week or once a month to search for and apply for scholarships.
5. Have your team talk to one another
Sometimes certain therapists and specialists adore your child but are not near one another to chat at the water cooler over your child’s brilliance. By taking the time to enable specialists to talk or email you are helping your child receive more of a united approach.
Now that we are in the iPhone age this can be as simple as one therapist leaving a one minute voice recording of what they accomplished in therapy along with any questions for the other therapist(s).
6. Make it easy to keep notes
Set up a system for you to keep notes easily. Whether it is a notepad, google documents or project management software such as Basecamp. Keep your notes in one place for easy reference and follow up.
Write down any questions or concerns immediately for simple retrieval the next time you need it. Book a weekly or monthly slot in your calendar for organizing and doing the action steps from the pile of papers.
7. Switch off
Being part of the nation that is known for having jewish guilt wired into its genes, it might seem antithetical to suggest you switch off. Yet, no-one benefits when you burn the candle at both ends. At a certain time each night commit to unplug and relax, take a warm bath or just put your feet up. After a good night’s rest you will be ready to return with vigor as the true mother lioness you are ….
They say it is what we already know that prevents us from learning. My challenge to you is to commit to take on one of the tips above and slowly take on more tips as you leverage your day to do more in less time.

http://www.friendshipcircle.org/blog/2014/06/19/7-tips-for-navigating-the-path-of-child-with-special-needs/

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Special Needs Apps!

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Some are free but some are not. How cool! Great time to have a kid with special needs. There is soooo much available!

With over a thousand apps now available to help individuals with special needs it has become increasingly difficult to find and choose the right special needs app. The Friendship Circle App Review gives you the ability to find the perfect special needs app for your child.

http://www.friendshipcircle.org/apps/

What’s a developmental delay?

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What’s a developmental delay?
The term “developmental delay” is an important one in early intervention. Broadly speaking, it means that a child is delayed in some area of development. There are five areas in which development may be affected:

Cognitive development
Physical development, including vision and hearing
Communication development
Social or emotional development
Adaptive development
Developmental milestones | Think of all the baby skills that can fall under any one of those developmental areas! Babies and toddlers have a lot of new skills to learn, so it’s always of concern when a child’s development seems slow or more difficult than would normally be expected. NICHCY’s developmental milestones page outlines some of the typical skills that babies and toddlers learn by certain ages. It’s a good resource to consult if you’re concerned that a child may have a developmental delay.

Definition of “developmental delay” | Part C of IDEA broadly defines the term “developmental delay.” But the exact meaning of the term varies from state to state, because each state defines the term for itself, including:

describing the evaluation and assessment procedures that will be used to measure a child’s development in each of the five developmental areas; and
specifying the level of delay in functioning (or other comparable criteria) that constitutes a developmental delay in each of the five developmental areas.
What’s your state’s definition? | Clearly, it’s important to know how your state defines “developmental delay.” Find out more about that definition by visiting NECTAC, the National Early Childhood Technical Assistance Center, at: http://www.nectac.org/~pdfs/topics/earlyid/partc_elig_table.pdf

Read more about developmental delay | NICHCY offers a fact sheet on developmental delay that you may find helpful in understanding the developing child, what to do if you’re concerned about your own child’s development, and where to turn for more information.

http://nichcy.org/babies/overview

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Who’s eligible for early intervention?

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Early intervention is intended for infants and toddlers who have a developmental delay or disability. Eligibility is determined by evaluating the child (with parents’ consent) to see if the little one does, in fact, have a delay in development or a disability. Eligible children can receive early intervention services from birth through the third birthday (and sometimes beyond).

For some children, from birth | Sometimes it is known from the moment a child is born that early intervention services will be essential in helping the child grow and develop. Often this is so for children who are diagnosed at birth with a specific condition or who experience significant prematurity, very low birth weight, illness, or surgery soon after being born. Even before heading home from the hospital, this child’s parents may be given a referral to their local early intervention office.

For others, because of delays in development | Some children have a relatively routine entry into the world, but may develop more slowly than others, experience set backs, or develop in ways that seem very different from other children. For these children, a visit with a developmental pediatrician and a thorough evaluation may lead to an early intervention referral.

Parents don’t have to wait for a referral to early intervention, however. If you’re concerned about your child’s development, you may contact your local program directly and ask to have your child evaluated. That evaluation is provided free of charge. If you’re not sure how to locate the early intervention program in your community—keep reading. We give that information a bit further down the page.

However a child comes to be referred, evaluated, and determined eligible, early intervention services provide vital support so that children with developmental needs can thrive and grow.

http://nichcy.org/babies/overview

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What is early intervention?

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If you’re concerned about the development of an infant or toddler, or you suspect that a little one has a disability, this page will summarize one terrific source of help—the early intervention system in your state. Early intervention services can help infants and toddlers with disabilities or delays to learn many key skills and catch up in their development.

What is early intervention?
Early intervention is a system of services that helps babies and toddlers with developmental delays or disabilities. Early intervention focuses on helping eligible babies and toddlers learn the basic and brand-new skills that typically develop during the first three years of life, such as:

physical (reaching, rolling, crawling, and walking);
cognitive (thinking, learning, solving problems);
communication (talking, listening, understanding);
social/emotional (playing, feeling secure and happy); and
self-help (eating, dressing).
Examples of early intervention services | If an infant or toddler has a disability or a developmental delay in one or more of these developmental areas, that child will likely be eligible for early intervention services. Those services will be tailored to meet the child’s individual needs and may include:

Assistive technology (devices a child might need)
Audiology or hearing services
Speech and language services
Counseling and training for a family
Medical services
Nursing services
Nutrition services
Occupational therapy
Physical therapy
Psychological services
Services may also be provided to address the needs and priorities of the child’s family. Family-directed services are meant to help family members understand the special needs of their child and how to enhance his or her development.

Authorized by law | Early intervention is available in every state and territory of the United States. The Individuals with Disabilities Education Act (IDEA) requires it–Part C of IDEA, to be precise. That’s why you’ll sometimes hear early intervention referred to as Part C.

http://nichcy.org/babies/overview

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Taking Care of Yourself When Your Child Has Special Needs

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Taking care of YOURSELF is IMPORTANT PERIOD, but when you have a special needs child it is CRITICAL!!

Taking Care of Yourself When Your Child Has Special Needs
Unpublished – Written for the now-defunct clubmom.com (August 2001)

Before takeoff, you buckle your seatbelt and listen to the flight attendant review emergency procedures. You hear that if the oxygen masks drop, you should adjust your own before assisting your child. Likewise, if you are on a lifelong journey as a special mom, you must care for yourself so you can effectively care for your child.

Self-care, however, requires TLC (Time, Liberty, Cash), resources often in short supply. Kathy Vestermark, mother of four, cherishes time for herself. “I gain stamina to advocate effectively for my child with multiple disabilities when I take time to do those things that ensure my self-preservation. Easier said than done!” Kathy adds, “My husband often reminds me to do something for myself. It’s hard not to give endlessly to others – especially to my son. I worry that if I relax my efforts, so will he.”

Psychologist Griffin Doyle, PhD, comments, “Parenting a unique child is a most difficult adjustment.” Coloring the parents struggle often is their guilt about not possessing sufficient emotional resources to match their internal image of an ideal, all-courageous parent. “Parents who respect, admit, and work through their guilt or other agonizing feelings truly are caring for themselves,” he adds.

Also, self-care can be a priceless model of self-esteem for the child to emulate. Balancing your needs with your child’s is the ticket. Here are suggestions from moms who achieve this balance:

1) Exercise daily. Donna Keating, whose five-year-old daughter has sensory processing disorder, says, “Usually, moms assume the task physically and emotionally of the child. It zaps every part of you. Exercise is so essential to relieve everyday stresses. I stick to my work-out schedule and rarely feel guilty about taking time out for myself.”

2) Volunteer for groups that are needier than you. Sorting clothes at Goodwill or serving soup at a shelter, you may feel less self-pitiful.

3) Take classes. Nanette Bevan, mother of three boys, one with Down syndrome and one with spinal muscular atrophy, says, “Pay for a course and go.” Nanette crafts glass and silver jewelry. Learning new techniques or working in the studio, she is in the flow. She stops worrying about her sons’ problems and returns home refueled.

4) Listen to soothing music. The Mozart Effect recordings and Nourishing the Caregiver (available through http://www.SensoryResources.com) are produced specifically to relieve stress and restore order. A loftier idea is to get the piano tuned and make music.

5) Talk to someone, besides your husband. If you talk only to him, Nanette advises, you ll probably keep bonking up against each other over the same issues. A sympathetic friend or relative can be a lifeline, especially if the person shares your sense of humor. Consulting a psychotherapist is also extremely worthwhile. Donna comments, “When your child has special needs, you spend every waking moment thinking and planning to stay ahead. Moms require quantities of support that a spouse, relative, or friend can’t easily provide. On days when the light at the end of the tunnel seems nowhere in sight, I find some relief networking with moms with similar children.”

To find a support group, visit websites related to your child’s disability. Many have message boards for sharing concerns, information, and even belly laughs. For families with children with SPD, a wealth of information about joining or starting a Sensory Processing Disorder Parent Connections group is available at http://www.SPDnetwork.org

6) Seek respite care for an afternoon, evening or weekend, at home or a licensed facility. Finding respite care is challenging. It can be cost prohibitive, and providers may be scarce. Perhaps your local government can guide you to grants to help you meet the costs. Groups that provide respite care, sometimes free, include:

• Local chapters of national organizations such as ARC (Association for Retarded Citizens) that offers Parents Night Out (www.thearc.org/faqs/respite.html) and Easter Seals (www.easter-seals.com)
• ARCH National Respite Network (919-490-5577 or http://www.respitelocator.org/index.htm)
• Campus Ministries or public service groups at colleges, where students may gladly volunteer to baby sit for kids as special as yours
• Hospitals and Red Cross chapters that train providers of children with special needs

7) Nurture good babysitters. Amy Cunningham, whose son’s visual dysfunction lowers his tolerance for new people and situations, advises, “Once you find good babysitters, woo them. Treat them like honored family members – and pay them well. Do whatever it takes to ensure their return.”

8) Barter time with similar parents of similar children. If you are single, maybe you can watch your child and other kids simultaneously. A babysitting co-op may also work well. To locate one, consult neighbors, community newspapers and bulletin boards.

9) Think positively. Amy says, “I take better care of myself, my son, and everyone else I love when I not only accept what is, but also acknowledge the secret, sweet, up side that makes my life seem divinely designed.”

When you find the time to care for yourself, you will see your family’s spirits soar. Buckle up, and let’s go!

http://out-of-sync-child.com/articlesinterviews/taking-care-of-yourself-when-your-child-has-special-needs/

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Got StReSs?!?

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Stress Management
There’s pretty much no way for the parent of a child with special needs to avoid stress entirely, but you can manage it instead of letting it manage you. Here are some techniques for taking control.

How to Give Yourself a Temper Tantrum
Do you lose your grip from time to time with a grown-up tantrum that comes out of nowhere? Check these steps to find out how you went from patient parent to total wreck.

20 Things Not to Worry About Today
You’re always going to worry about how your child’s doing in school, but just for today, make a conscious decision to give those worries a vacation. The world won’t fall apart, and you may find a more productive way to deal.

Keep a School Year Calendar
Don’t wait until it’s almost too late before jotting down meetings and special school events. Fill a calendar before the first day of school and give yourself an A for organization.

Take a Day Off
Every parent needs to take a break now and then, and parents of children with special needs more than most. You can’t stop being a parent and you may not be able to step out on your job, but here are some things you can take a day off from.

Control Your Reactions
Your child may push your buttons, but giving big reactions to bad behavior may send the wrong message. Showing that you can control your feelings and avoid meltdowns yourself models appropriate behavior for your kids, and leaves you feeling better, too.

10 Ways to Work Out with Your Child
Getting out of the house long enough to get some decent exercise can be hard for parents of children with special needs. These products can help you get moving right where you are — and have fun with your child at the same time.

Five Journal Ideas You Can Really Keep Up With
Writing in a journal is a great way for parents of children with special needs to get in touch with their feelings and confront their worries, but it can sometimes be hard to find the energy or inspiration to keep up with one. Here are five ideas that will give you the motivation you need.

How to Worry More Constructively
Worry is hard to avoid when you’re the parent of a child with special needs. The trick is to turn your destructive worrying into constructive worrying.

Give Yourself a Time-Out
Giving yourself a time-out when you’re about to lose your temper is a healthy way to release that stress, and models good coping skills for your kids, too.

Reducing Special Needs Parent Stress
An essay on finding stress relief in small doses, from a parent of a child with Asperger Syndrome.

Set Up an Online Family Holiday Headquarters
Forget frequent phone calls and urgent e-mails. Put all the info about your family’s holiday plans in a weblog, and keep everybody on the same page while having more time to deal with your child’s needs.

Low-Stress Christmas Cards
Parenting a child with special needs around the holidays, when you need to work overtime to prevent meltdowns, can make it hard to find time to wedge in the usual holiday card signing, sealing and stamping. Save time and stress by sending eCards instead.

http://specialchildren.about.com/od/stressmanagement/

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Tips for LD Teens on Getting Organized

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While nobody likes to be disorganized, for students with learning disabilities, disorganization can spell certain disaster. Searching for lost assignments or course handouts can take up valuable time, and it’s almost impossible to study and meet deadlines when notes from different subjects are all jumbled together.

There’s no “right” way to get organized. Teens need to be creative and flexible until they discover what works best for them. Here are some tips and suggestions from successful students and adults.

Tips for Students: Ideas to Help Them Get Organized
Do you know students who are challenged when it comes to staying organized? Share the following tips and ideas with the teen in your life.

If you work well with technology, use organizer software on a computer, a smartphone or tablet.
Retype your class notes and save them (with dates and course titles) on your computer. You can email them to yourself for easy access or use file-sharing software like Dropbox.

Write reminders on sticky notes or keep list pads around your room, by your desk, in your notebooks, and even by your bedside to write down things as your think of them. Be sure to collect these notes and consolidate all of the reminders on a single “to-do” list every day.

There are also plenty of smartphone apps that provide digital sticky notes. Use these when you’re on the go or all the time if digital sticky notes are easier to compile than their paper counterparts.

Divide your notebooks into sections for each subject. Hole punch and insert handouts or assignments in the appropriate notebook sections. Be sure to use dividers, and consider using different colored tabs for each subject.
If you tend to lose papers, try using a zipper binder to keep track of homework assignments.

Create a system for tracking papers.
A file cabinet might work well, or you can find a cardboard box large enough to fit file folders, label a folder for each subject, and insert papers in the appropriate file folders in the box.

Keep keys on a big ring so that you can find them easily, or use a brightly-colored key chain. If you store homework assignments and other important papers digitally, you can transfer these documents onto a USB device that can attach to your keychain.

Try a dry-erase calendar board if you want more space (and like using markers!) to keep track of daily tasks and events.
Make a daily list (on paper or on a smartphone) of everything you need for classes, labs or meetings. Include reminders for money, transportation and food. Check the list every morning before leaving your room so that you know what you have to do.
If you have trouble keeping track of passwords, try using password manager software like mSecure.

http://www.ncld.org/students-disabilities/homework-study-skills/tips-teens-getting-organized

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