Parents who care for special needs children face unique circumstances when it comes to finding childcare services that are consistent, compassionate, and of high quality. You have more to consider to insure that your child’s needs are addressed and proper communication occurs between you, your child’s medical team, and the childcare provider. You have to research thoroughly and prepare specific types of questions to find the arrangements that best suit your family situation and your child’s medical, developmental, or behavioral special needs.
Whether you are returning to work after being at-home with your child or you have a school-age child who has recently been diagnosed with a special need, a few of the most crucial aspects of childcare you will want to look for include:
Character traits in your care provider, such as compassion, patience, trustworthy and a loving presence are equally as important as their skills and experience.
The decision about providing care at home or bringing your child to a facility outside the home is based on several factors, some of which are:
While all daycare centers must admit children regardless of disability, a special needs daycare center may be able to better service children with complex needs or those who require special resources/equipment or individualized care. A specialized nanny or at-home care provider may be the right choice for children who have complex disabilities and require one-to-one care. Cost and logistics are something that each family has to assess for themselves. No doubt, you want to strive for the best care at the most affordable price for your budget. Whether you choose at home care or a daycare facility, you’ll want to do your homework.
Before you jump on Google to research childcare options, there are important questions you need to answer about your family situation and your child.
Answering these types of self-assessment questions (see Resources below for more) combined with discussion with your child’s therapeutic team will help you do good research and make the best choice for your family and child. This also provides you with good information that you’ll need when you start talking to care providers.
A variety of resources are available online and from national agencies to help you plan the types of questions to ask a care provider, be it an at-home agency /provider service such as Care.com or SeekingSitters.com or a childcare facility near your home. The specific questions you ask will be relevant to your self-assessment and your child’s special needs. Some of the more important topics to inquire about include questions about
A good resource for questions and checklists and the types of information that should be shared with caregivers has been created by the Maryland Family Network for Inclusive Child Care. The Directions resource from the State of Connecticut provides information about how to organize your child’s health information and includes everyday childcare options that you may need to think about for your child.
Once you’ve done your research, checked references, and have narrowed down your options, ask if there is a “trial day” or “trial week” available. Observe your child’s response to the care provided. Does your child respond to the providers and the new experience in ways that are typical for them? Or, is there an unexpected escalation in problem behavior? There will always be a challenge when a special needs child encounters a change in routine; you are looking for evidence that the childcare service can provide an atmosphere within which your child can thrive in response to the level of care that is required of her or his special need.
In addition to these resources, Google “special needs childcare providers in (your town or county)”.
Special Needs Resources Connecticut via ConneCTKids.gov provides listings and a wide variety of information about government and non-profit resources, commercial and national resources. Sub-categories for different needs (i.e., Autism, assistive technology, family support)
CT Department of Public Health has a Child Development Infoline and care coordinator, brochures, respite/emergency funding resources, and materials to help you plan and coordinate care.
Directions is a CT Public Health guide to help you plan and coordinate care for your child or adolescent with special health care needs. In Directions you will find: ways to organize your child’s health information; information about caring for your child’s special needs; resources; and tips from other parents of children with special health care needs.
Parents.com Interactive Childcare Safety Checklist
Respite Care for Children with Special Needs is a resource to help a caregiver take much needed “personal time” while entrusting their special needs family member to the care of a qualified individual. It explains why respite care is important for full-time caregivers, how to access funding, and how to select a respite caregiver. **
**The Talcott Center Blog will feature an article about this topic in the near future.
Children with special needs, particularly older children and children whose special need is “invisible” to others, may have more of a struggle with the transition back to school. Children entering intermediate or middle school (grades 4-7) are likely to be moving into a new school building, merging with students from other schools in the district, and dealing with the social and emotional development challenges that come with the pre-teen years. This—in addition to living with attention deficit, Autism spectrum, or other learning disorders that are not visible to others the way physical disabilities are—can create a perfect storm of developmental chaos at the start of a new school year.
Whether you child is transitioning to a new school, a new grade level or both, there are steps you can take to ease the back-to-school burden for your child.
1. Plan Ahead with P.E.P. There are three main areas to address in planning your special child for the transition:
People: Before school starts, make arrangements for your child to meet with the people she or he will spend most of the day with: teachers, guidance staff, administrative staff, principal, school nurse and if applicable, the bus driver. Help your child understand who is the “go to person” for different concerns or questions that may arise.
Environment: The guidance or front office staff should be able to arrange a tour of the grounds—buildings, classrooms, recess/gym area, parking areas, restrooms, and the routes leading to and from the school building. Make note of areas that are off limits to students and explain why. If construction is taking place around the school, let your child know what to expect.
Personal Needs: Meet with instructors before school starts or during the first week to go over your child’s triggers/stressors, IEP, behavior plans and communication strategy between home and school.
2. Share Data. If anything has changed since the end of the previous school year, update your records and share this information with the school nurse, counselor or educators who will work most closely with your child. For example, coping strategies that may have worked during fifth grade but have changed in the months leading up to grade six. If there is any new testing data for your child, bring that to the school rather than relying on your healthcare team to fax it over.
3. Establish Goals. You may have long-term goals for your child (e.g., graduating middle school), but even typically developing teens don’t take the long-term view of what they need to accomplish and why. Break large goals into small, manageable objectives and celebrate their achievements along the way. Help your child connect objectives to the bigger goal by reminding them of how they are related. This can be done for each subject/class or for sports they enjoy. For example: Math homework may seem like busy work and pointless to your student. Help them understand how multiplying larger numbers will help them solve real problems like how many jerseys to order for 17 players who each need two jerseys in two different colors.
4. Share Personal Experience. Grown-ups forget what it was like to be an adolescent. Sure times may have been different, and we tend to see our past through rose-colored glasses. If you think about it long enough, you’ll recall experiences where you struggled, failed, overcame a challenge, etc. Even if you grew-up without the challenge of learning or other developmental challenge, you can find experiences to relate to you child to convey that you empathize and have, even walked in similar shoes as they are in now.
5. Make a Transition Book. During your meetings with teachers, take pictures of the rooms, hallways, and exterior of the school grounds. Work with your child to create a book with these pictures, label each area and what typically takes place there. Use a school map to reinforce special event procedures such as assembly, dances, and fire drills.
6. Review the Routine. Once your child has a schedule, review the routine for each day the night before. This is especially helpful if your child has a rotating A-B schedule, and changes classrooms/teachers during the day. Use the school map to label the location of classrooms, teacher’s name, etc.
7. Arrange Peer Socials. Before school starts and during the school year, arrange social outings so that your child can connect with friends they will be going to school with as well as friends from their old school. These can be simple get-togethers at the mall, movie night, meeting for an ice cream, or having a pizza at your home.
8. Go Digital; but Keep Hard Copies. Keep up to date print copies of IEPs, emergency procedures and other important documents on hand for times when you can’t access digital data. This also is a good idea for your child’s homework.
9. Expect Mistakes. Every child is going to forget homework, bring home a poor test grade, and struggle with peer relationships. Every situation has to be examined individually and determined if it’s an isolated event versus part of a bigger pattern. Yelling rarely works with any teenager. Talk through what did or did not happen that resulted in the situation. For example, did your child not study for the test? Did they express something in an inappropriate way? Were they caught in the crossfire with other kids? ~ Schools and teachers are going to make mistakes as well. Keep calm, be diplomatic, gather the facts, and know what you expect to happen before you show up at school with demands.
10. Reward Success. When your child (or their teacher or other school personnel) does something well, let your child know how you feel about their achievement—even if its as simple as bringing up a grade by few points or winning an essay contest. Point out specific things about their achievement that really stand out to you. Likewise, when the school is doing things right, they need to hear from you.
How to Prepare Your Child With Special Needs for the Back-to-School Transition (empoweringparents.com)
Tips for Helping kids with Special Needs Change Schools (childmind.org)
School Transitions for the Elementary Grades (autism-societ.org)
We hope it never happens to us, but the reality we all live with is the threat of a natural disaster or terrorist attack that could devastate the place we call home. For families with special needs children, emergency preparedness becomes even more critical because there is so much more that you have to mobilize to ensure the safety and care of your child.
A variety of resources are available to help you prepare in the event of a disaster. But there isn’t one plan for every family because of the great range in resources required for children with different types of special needs. We’ve outlined key steps you should focus on in preparing for your child’s special needs. You’ll also find more in depth resources listed at the end of this article.
Think about what kinds of supplies, medicines and assistance your family needs on an ordinary day. In the event of a disaster, you’ll need those resources ready to go and in place for at least 3 days on your own before rescue workers may be able to reach you. A few key questions to think about:
Part of your assessment of family needs is to learn as much as you can about local disaster response services. Some states and municipalities have a registration system for individuals with disabilities and intricate medical needs. Some local organizations you can call are:
In addition to survival basics such as food, water, emergency lighting and radio, first aid, and tools – you will likely need:
A personal support network goes beyond your immediate family and neighbors. In a disaster situation, you may not be able to reach them. It includes local associations specific to your family member’s special needs, medical providers, and personal care attendants. Cast a wide net so that in an emergency situation you can reach someone in your network. Even more importantly, these people will know how to reach you and look for you based on your evacuation and emergency care plan.
Review your plans at least once a year; twice if you live an area more prone to natural disasters or other type of -risk threat. Also, remember to:
Disaster can strike at anytime. None of us are out of range of threat and we all need to be prepared.
Emergency Preparedness for Children with Special Needs. Center for Children with Special Needs: http://cshcn.org/resources-contacts/emergency-preparedness-for-children-with-special-needs/
Resources for Emergency Preparedness and How to Organize Your Child’s Information
CT Department of Public Health: Resources for preparing young children and those with disabilities: http://cshcn.org/planning-record-keeping/
Connecticut Resource Guide for Including People with Disabilities in Disaster Preparedness Planning: http://www.ct.gov/ctcdd/lib/ctcdd/guide_final.pdf
Emergency Preparedness for Children with Special Needs Emergency Preparedness for Children with Special Needs (2013). https://blogs.cdc.gov/publichealthmatters/2013/07/emergency-preparedness-for-families-with-special-needs/
Red Cross: Disaster Safety for People with Disabilities: http://www.redcross.org/get-help/how-to-prepare-for-emergencies/disaster-safety-for-people-with-disabilities
Checklist for Children with Special Nutrition Needs: http://depts.washington.edu/cshcnnut/download/resources/disasterchecklist.pdf
FamilyVoices.org. Disasters and Emergencies: Keeping Children and Youth Safe: http://www.familyvoices.org/work/caring?id=0004
When a child is delayed in development of fine motor skills, learning to print, let alone write in script, can be a tiresome and frustrating task. Working through the frustration to help a child learn to print, and then write their name to the best of their ability has many positive outcomes:
If a child has a health condition that affects their nerves and muscles, or if there is a learning disorder, it’s easy to understand why it is difficult with learning to write. Handwriting requires communication between the brain and the coordinated effort of the eyes and the muscles of the hand, fingers, wrist, and forearm. The child must be able to develop the strength and dexterity necessary for holding a pen or pencil while keeping the hand steady even as it moves across the page and makes micro-movements to form letters. Add to all of that while sitting still at a desk or table.
For special needs children, including those who have dyslexia, autism, or ADHD, learning to write requires an enormous amount of energy, focus, and practice. It’s good to keep in mind that even children who do not have physical or learning disorders have a difficult time with handwriting—it takes time, patience, and practice for them as well. In fact, many schools use the Handwriting without Tears® curriculum for all children.
If your child is enrolled in a skills class or occupational therapy program that teaches handwriting, you will want to follow the therapist’s instructions for handwriting practice at home. If you are working with your child independently, keep the following things in mind:
When a child writes their own name for the very first time, to them it feels like their name is up in lights! Celebrate and reward your child in meaningful ways. Recognize that exercise and practice can help improve these skills but struggle is par for the course. Your child may never write perfectly, but that’s not the goal. Rather, the goal is to be able to communicate as clearly as possible in their own unique handwriting, and establish motor patterns that will be useful in other forms of communication.
The ABCs of Handwriting for Children with Special Needs. FriendshipCircle.org
Improving Handwriting in Children with Autism especialneeds.com
When it Comes to Handwriting, Practice Doesn’t Always Make Perfect. Additudemag.com
Handwriting and Letter Formation (Tips for a multisensory approach for all children, some tips may apply to children with special needs.)
Hand Strength and Dexterity Tools & Toys eSpecialNeeds store
Do you get overwhelmed when choosing a vacation destination that is suitable for your special needs child and exciting for other family members?
You’ll be glad to know there are travel planning services and vacation destinations that are gaining recognition for specialized services for families with special needs, including ASD and ADHD. For example, cruise lines, and destinations can acquire an Autism Certificate (e.g., Beaches resorts). Another option is for a service, destination or program to receive recognition or designation from one of the national organizations or research centers that specialize in ASD or other special needs, including:
To receive the designation as Autism-friendly, the resort or service has to meet certain standards. This usually includes specialized training for employees who assist guests with travel before, during, and after their trip.
While there isn’t a travel industry certification specifically for agents, many who specialize in travel services for special needs do so because they have experience with a special needs child or adult in their family. Some agents may be eligible to acquire an Autism Certificate from a credentialing organization. Others have established a strong network with practitioners, national/regional/state organizations, and support groups.
To help you sort through the choices and planning that goes into traveling with your special needs child and their siblings, we brought FAQs to travel specialist Jennifer Trinidad of Majestic Palms Travel, an agent of Modern Travel Professionals. Jennifer is the parent of a sensory hypersensitive child. She and her husband Christian specialize in travel services around the world for families who have children with a wide range of needs, from food allergies to developmental and sensory conditions. They have helped families navigate travel to Disney, Europe, the Far East, Canada, the Caribbean, Hawaii and mainland U.S., as well as cruises.
Take the time to do an initial phone call with the agent(s). Five basic questions to ask are:
Keep in mind that the right travel planner for your family may or may not be in your back yard. Many travel planners will work with clients regardless of where they live.
When you speak to an agent, be honest and up front about your concerns, interests, and needs. If the thought of planning the trip, and the “list of all of the possible things that could go wrong” that your brain decides to play on loop makes you want to run for the hills and hide, say so. Every family comes from a different place, mindset and experience level. If your agent knows where you’re really coming from, they’ll be better able to help guide you through the quoting and booking process, and the planning process to follow.
The goal of any questions an agent will ask should be to generate a conversation so that your needs and what is truly important to you and your family are brought to the surface during the initial quoting. A more directed initial quoting process benefits everyone. For us, we have a set of baseline questions for our clients during the initial conversations. These help us know where to dig further to make sure we look at the destinations that may best suit the family.
Some of the questions we may ask:
Families traveling with special needs have a variety of options, and those options will depend on your specific situation, interests, and comfort level:
For those looking for an all-inclusive option, our favorite for families with special needs of all types are the Beaches resorts in Turks & Caicos and Jamaica. Custom kids programming, experienced staff, a culinary concierge program to support dietary needs and an all-inclusive environment gives everyone a well-deserved break (that means you too, parents and caregivers).
If you prefer to stay stateside, Tradewinds in St. Petersburg, FL has received an Autism Friendly Certification. Also consider:
Rental homes are available throughout these areas, in addition to hotels. In Southern California, of course, are the three resorts located on-site at Disneyland in Anaheim.
Of course, there is Walt Disney World in Orlando, which we absolutely love for the many ways the parks accommodate for special needs. We also like Universal Orlando Resort. Universal Orlando is consolidated in size compared to the Disney parks. You can take an accessible walkway from any of the five (soon to be six) resorts to the entrance of Universal CityWalk under 20 minutes. Depending on your on-property resort choice, you’ll also be able to take an accessible water taxi or bus. With advance notice, special dining considerations can be met at many of the full-service restaurants. Universal Orlando’s private and small-group tour guides provide a add-on VIP experiences that may provide the personalized attention some families require. Also, express passes help families avoid congested and long waiting lines. Many rides at Universal Orlando theme parks also have a Family Waiting Room, providing a safe and sheltered place for those not riding to await those that are.
Many of the U.S. National Parks have accessible trails and activities, as do some states’ parks (check with your specific state). Depending on your specific situation, there are also cabin rentals in many parks across the country, such as Allegheny State Park on the NY/PA border, as well as RV parking/camping areas. Amtrak vacations are also a nice way to enjoy both the journey and the destination.
For more adventurous or globetrotting families, we recommend Adventures by Disney tours. With over 40 land and river cruise itineraries around the world (including the U.S and Canada), Adventures by Disney is different from other “group tour” companies. Aside from many immersive and unique “backstage” experiences included in your package (such as private, after-hours access to the Sistine Chapel in Rome), each tour is led by two Adventure Guides who specialize in the locations and can work with their guests on activity levels and other needs. While not every itinerary can be customized to every need, Adventures by Disney will have those discussions with travel agents and guests during both the booking process and planning process (so you don’t deposit a trip your family won’t be able to do).
Cruise lines have also take up the mantle of accessible accommodations. Royal Caribbean Cruise Line, Celebrity Cruise Line, Norwegian Cruise Line, Disney Cruise Line and Carnival Cruise Line have been recognized for their support of children and adults with Autism and other disabilities; Royal Caribbean and Celebrity have received formal Autism Friendly Cruise Line certification. All can accommodate several dietary needs. If accessibility is needed, work with your travel agent to assist you with securing an accessible room and onboard accessibility devices from approved partner vendors.
Destination choices generally come down two core considerations:
Keep in mind that the right travel planner for your family may or may not be at the agency in your hometown or the one owned by your cousin Sally. Search online and research agents and their services as much as you can. Many travel planners will work with clients regardless of where they live. Finally, allow your travel planner to help you think through where it makes the most sense to allocate your hard-earned travel investment in alignment with your family’s needs.
Special Needs Vacation Spots (list provided by TheVacationCritic.com)
Allergy-Friendly Travel Resources (provided by Majestic Palm Travel Agency)
Cruise Planners: Easy Access Travel; “Autism on the High Seas”
World Travel Excursions – Agencies specializing in family and group travel around the globe; list provided by FriendshipCircle.org
CARD Center for Autism Disorders find locations and then visit the. If you don’t see resort/vacation designations for a state, call the center for assistance.
Choosing a summer camp for a child with autism or other special needs can quickly becoming overwhelming. Our summer camp planning tips will help you gather and organize information so you can make the best camp choice for your child.
In any geographic area, but particularly in our corner of Southern New England, there are myriad traditional and specialty camps designed for every age and ability. Some camps will run the entire summer while others offer shorter sessions (1-2 weeks). Traditional camps may accommodate for certain special needs, and may be a suitable option. Or, you may prefer a camp that exclusively works with specific needs such as autism or learning disabilities. The best way to narrow down your options is to focus on the objectives you have for your child’s camp experience, the camp’s capabilities and operations, and your budget.
Think about the purpose behind sending your child to camp:
Unless your child’s interests are highly specific or they have highly specific needs, the first time away at any camp, you may want to consider a camp that offers an array of experiences. You’ll want to balance that with your child's level of readiness to move outside their comfort zone, something that should be discussed with your child’s healthcare team.
How ready is your child for the camp experience? Once you’ve thought about objective for your child’s camp experience, consult with their healthcare team, teachers, and therapists. They can help you determine if your objectives are realistic. You should discuss your child’s level of readiness for a particular experience, if it is time to nudge them toward a new experience, and how to best prepare your child. As you continue with your research, you’ll likely revisit this conversation with your child’s team.
If you can, tour any camp of interest the year before you send your child. This gives you a chance to see how the camp operates while in session with registered campers. Certainly plan to attend camp fairs where you can gather info on a variety of camps in your region. Most camps offer a preview day so you and your child can experience a day of camp life. There are many regional and state camp directories on line to facilitate your research. (See Resources at end of article).
Interview the camp director and head counselors by phone or in person. Key questions to ask:
Be honest with the camp about your child. You not only want to interview the camp, you want the camp to show a vested interest in learning about your child. What questions do they ask about your child? What paperwork do they keep on file? Do they communicate with your healthcare team on an as needed basis (with your consent)?
Be honest about your child’s needs, strengths and areas for development. Be forthcoming about their limitations socially, emotionally, and physically. For example, if your child needs assistance to get the day started but by afternoon is more independent and energetic, let the counselors know this so your child’s daily schedule can be adjusted accordingly. If your child has behavior issues, let the camp know.
If this will be your child’s first time at any camp, plan extended period of time that they are apart from you. Arrange long day trips with friends or family so your child gets use to being apart from you for the day. Especially for residential camp prep, arrange a sleepover with a so they can get used to being away from home. Begin with one night and progress to three nights for a more immersive test experience.
When the time for camp arrives, pack a photo album or other reminders of the family in their bag. If they use digital devices at camp, record messages from family and store photos and favorite songs on it. It may also help to alert counselors to comforting routines for meals or bedtime. You and your care team also should talk with your child about homesickness. You can share your personal experiences and let them know it is just temporary to feel homesick.
You’ll make a great camp choice if you do your homework, consult with the child’s care team, and focus on where your child will thrive in the camp experience, and be able to partake in activities that interest her/him while addressing their special needs.
To get started exploring your options, learn more about Talcott’s Summer Camp Programs…so many adventures await for your child!
Disability info Camp Directories: An index of special needs camps searchable by state.
Online and downloadable guide that organizes camps by category (e.g., autism, learning disability, metabolic condition, physical condition, etc)
Asperger/Autism Network: Choosing a Summer Camp
Autism Consortium: Time for Summer Planning
Special Needs Alliance: Choosing a Summer Camp for Kids with Special Needs
Special Needs.com: “How to Choose a Summer Camp”