January, February, March 2025
From the Director: New Year, New You
It’s that time of the year where people are trying to find their great-and-grand New Year’s Resolutions that are chosen to make the new year a more successful, happier, and healthier year. Sometimes—oftentimes—these resolutions have unreasonable expectations that will be difficult, or even burdensome, to meet. These New Year’s Resolutions do not have to be great-and-grand; they just have to mean something to you. Setting smaller, more achievable goals will help set you up for those larger, great-and-grand resolutions.
A few suggestions for resolutions might include:
· Spend more time outdoors
· Take an hour a week to do something for yourself
· Family Game/Movie Night once a week
· Read a book
· Go on a trip
The resolutions don’t have to cost a whole lot of money, be physically demanding, or take up valuable time. It simply should be something that you feel will make YOU feel better.
Happy New Year, y’all!
Jacki Pierce
How to Help Someone Recover from a Hospital Stay
Many patients lose strength, mobility, and stamina during a hospital stay. To help them get back in shape—or make the most of rehabilitation—after being discharged, caregivers should consider these recommendations.
Plan Ahead
Before patients leave the hospital, go over the posthospitalization plans, including follow-up appointments, referrals for rehabilitation, and any changes to medication. Familiarize yourself with the possible side effects of short-term medications. “Inquire about opioids and drugs causing drowsiness or side effects like constipation,” says Elizabeth Phelan, MD, professor of medicine at the University of Washington School of Medicine and attending physician at Harborview Medical Center in Seattle. “If any pre-hospitalization medications aren't on the discharge list, ask whether to resume them.” Also, clarify what should be monitored at home (blood pressure, weight, and fluid intake), who should get this information, and the best way to communicate.
Be a second Set of Ears
Patients may experience fatigue, weakness, or confusion from new medications or sedative agents. Caregivers should be there during the discharge to listen, ask questions, and take notes.
Update the Doctors
The patient's primary care doctor and neurologist may know about any elective surgeries, but in emergencies, they may not. “Ideally, patients should see their neurologists as soon as possible after being discharged from the hospital,” says Michele Tagliati, MD, FAAN, professor and vice chair of the neurology department at Cedars-Sinai Medical Center in Los Angeles. “If they don't have the strength or energy for a doctor's visit, ask if telehealth appointments are possible to discuss a care plan with the neurologist and ask questions that have arisen since discharge.”
Consider Rehabilitation
Ask doctors and therapists whether any specific rehabilitation services are needed. If so, inquire about the goals, such as improving strength, mobility, or daily functioning. Research facilities and find out about the staff's training and experience with people who have neurologic conditions. “Share information about medication use during any rehabilitation program,” says Michael Okun, MD, FAAN, director of the Norman Fixel Institute for Neurological Diseases at the University of Florida. “Outcomes are better when medication is given on time every time, so the rehabilitation facilities need to know the schedule.”
Guard against falls. Do what is needed to prevent falls, and be sure your loved one understands the importance of such measures. For example, if patients are discharged with walkers, “be sure they use them consistently until their doctors or physical therapists say they don't need them anymore,” says Dr. Phelan. “If physical therapy is recommended, make sure to follow through.”
Keep them Active
Help loved ones resume, or start, a regular exercise routine that enables them to make up for any losses in cardiovascular conditioning, muscle strength, and balance. If they are allowed to walk, encourage them to walk several times per day, increasing the distance and duration gradually over time, says Dr. Tagliati.
Promote Good Eating
Melissa Mattison, MD, chief of hospital medicine at Massachusetts General Hospital, says that upon returning home from the hospital, people should avoid fried, processed, and salty foods and focus on fresh fruit, vegetables, and lean sources of protein. They should also stay hydrated by drinking nonalcoholic and noncaffeinated beverages.
For more information visit
Happy Holidays from our family to Yours!
Being a Parent of a child with a disability comes with its advantages and disadvantages around Christmas time. Christmas can be quite an overwhelming experience. Changes to the environmental routine and social expectations can mean that Christmas may be confusing and challenging. Christmas can be an overstimulating time of year and lead to sensory overload for some children. Lack of general accessibility can make it hard for children to join in with their friends and family for festive celebrations. Some families don’t know what to get, some kids may not want to be around many people, or some kids may not play well with other kids. Well, I have a daughter who is hearing impaired in one of her ears and has epilepsy. She loves toys with music. Given that she doesn’t hear out one of her ears whenever she hears music she starts singing or dancing. When picking a toy it's best to figure out what interests the child, unlike my child if she sees a kid with a toy she wants, she will fight the other child for it. That’s where reinforcing comes in. I make my child understand that this is what you wanted. You can’t have what someone else has. The holidays can be a stressful time for many parents as they are filled with expectations to be cheerful, festive and outgoing. It’s important to remember that no Christmas is perfect or stress-free, no matter what social media might suggest! Your Christmas doesn't have to match anyone else's ideas or expectations. Focus on creating a celebration that brings you and your family happiness, joy and peace!
For more information visit https://www.autismparentingmagazine.com/autism-christmas-overwhelm/
Ensuring Access: Resources for Medical Transportation Assistance
Getting to and from doctor’s appointments is an essential part of maintaining our health and the health of our family members. However, for some, accessing these appointments can be challenging for various reasons. It might be due to a family member being unavailable to provide transportation or because your vehicle isn’t equipped to accommodate medical devices such as wheelchairs.
Access to healthcare is a necessity and should not be put on hold due to a lack of reliable transportation. So, what can you do? Most insurance providers—whether Medicaid, Medicare, or private insurance—often offer services you can utilize for medical transportation. Be sure to explore your providers services and know what is available per your policy. You can also locate local community resources that may offer transportation services. Your region’s Families Helping Families organization would likely be happy to provide you with resources specific to your area. Another idea is to check if your city offers public transit options that are accessible to you. This could also include rideshare services like Uber and Lyft, which provide specialized options such as Uber Health and Lyft Healthcare. These services partner with healthcare organizations to offer rides to medical appointments. Additionally, contacting your clinic or hospital may be available option, as some facilities provide transportation assistance. All this is to say there are services available that can be utilized for your health and well-being. However, in more rural areas, accessing these services may be more challenging.
Below, you’ll find links to resources and information about medical transportation options that can help make accessing care easier.
Bureau of Health Services Financing (Medicaid) - LDH - Medical Transportation
Provider & ramp; Plan Resources - LDH - Medical Transportation Provider Resources
Sign Up for Lyft Healthcare
Uber Health - Home Page
Louisiana Healthcare Connections - Information for Transportation to Appointments
Healthy Blue Transportation Services
Humana Medical Transportation Services
Aetna Medical Transportation Services
For further reading on Rural Healthcare visit: Rural Health Information Hub
We are now entering the second semester of the school year—a fresh start! Now is a good time to meet with your child’s teacher if you are having any concerns about your child’s academic progress, potential learning gaps, social development, and future academic endeavors. Too often, concerns are not expressed until it is too late in the school year to effectively assist a child to become more successful academically. If you have concerns with your child’s academics, schedule a meeting with his or her teacher to discuss these concerns. If there are concerns that your child may need special education supports, you may request an SBLC meeting or an academic evaluation in writing to his or her teacher or principal. It is important to remember, however, that special education supports are simply that—supports. These plans are meant to support your child to be academically successful; they are not meant to “do for” your child.
Must-Have Mardi Gras Tips for Parents of Kids with Disabilities
In Louisiana, parades and festivals are a way of life. We look forward to the excitement of Mardi Gras all year long as we reconnect with neighbors, family and friends on the parade route. For children with developmental and behavioral disorders, all of the sensory information that comes along with a Mardi Gras parade can be overwhelming. The very nature of these parades — the crowds, throws, loud noises, sirens, and lights — can present a challenge to parents and caregivers of children with sensory sensitivities who wish to experience one of the best parts of Mardi Gras.
It’s important to recognize the significance that this season has to our community. To miss out on Mardi Gras is to miss out on what makes our part of the country so unique. The Carnival season inspires a tremendous sense of community between participants and neighbors and not being able to experience the fun can lead to an increase in feelings of isolation and stress for children with disabilities. But with some advanced preparation and a little day-of know-how, everyone can still enjoy the magic of Mardi Gras.
Here are suggestions and recommendations for how parents and caregivers can prepare children with sensory sensitivities and disabilities to celebrate the Mardi Gras holiday safely.
Planning Ahead
Prepare for the parade days if not weeks ahead of time. Review what will happen during the parade from beginning to end, and even act it out in the controlled environment of your home. This way, you can build your child’s awareness of the event while also learning what might become a potential trigger once you are in the actual parade environment. YouTube is a great resource for parade preparation. Search for parades and play them for your child so they can get used to the experience of watching a parade in person. This will help them start to learn and recognize what to expect ahead of time. Picture books about parades are another great resource
Play can be a great way to prepare your child for the sensory experience of the parade route. Act out a parade in the house with all of the things that go along with it: cheering, marching, music and throws. You can practice tossing stuffed animals safely in the house, so children get used to the concept of throws coming off of the floats. Talk through the whole experience in advance including who will be going to the parade with you as a group. The goal is to reduce ambiguity and limit the unexpected across the whole experience.
introduce children to the route and themes of the parades ahead of time, so they can get excited about what they are about to experience. The Carnival parade bulletins with pictures of the floats which run in the paper is a great resource for this. Print off the route of the parade and trace the path of where the floats will go. Children can hold the map and imagine the route from beginning to end so they know exactly what is going to happen.
On the Route
Most of these tips will be familiar to parents and caregivers who have attended Mardi Gras in the past. Again, preparation is key and will reduce stress and anxiety ahead of the experience for everyone! Pick your spot on the route ahead of time. In New Orleans, Uptown is generally considered to be the most family-friendly area of the traditional parade route and it has the added advantage of catching the riders when they are at their most organized and coherent. If you have a friend or colleague with a nearby bathroom, even better!
I highly encourage arriving early and choosing to attend the parades which are earlier in the day. Stake out your spot and introduce yourself to the other parents and people around you to build respect and awareness. If you’re comfortable, let these parade neighbors know that you have a child in your group who will be extra sensitive to the sound and visual stimuli so they can act as additional eyes and ears and protect your area. Make sure your child eats ahead of the parade and bring lots of snacks and drinks to the route. Respect their sleep schedule, and you can even bring a wagon along where they can sleep if needed.
Some of the items recommended to pack in their bags ahead of time include:
Noise cancelling headphones
Fidgets or a stress ball
Favorite stuffed animals for comfort
A weighted jacket, weighted blankets or a weighted lap pillow. Depending on the specific needs of your child, sitting in a folding chair with these items on may reduce a lot of environmental stress.
Sunglasses in case the floats are bright
Tissues and hand wipes
Relaxation activities that are engaging but also soothing: books, bubbles, coloring books, Etch A Sketch, and other portable games
Flashlights: some kids may enjoy playing with these in between parades/ floats
An eye mask in case you need to further reduce the visual stimuli
As always, be careful with throws from the floats and be ready at all times to catch them on behalf of your child. I also encourage parents to attach some sort of bracelet or identification on their child if the child elopes or runs. If that is the case, you should also set up a perimeter around your area ahead of time and share this information with the other parade-goers around you.
Final Notes
Keep in mind that you may not get to stay for the entire parade, and that’s okay! If you made it out the door, you should consider the day a win. And even if you can’t make it to the parade route, Mardi Gras is still the perfect time of the year to celebrate Louisiana culture and heritage wherever you are. Throw your own Mardi Gras celebration with family and friends at the house and enjoy the best part of the Carnival season: spending quality time together and having fun.
For more information please visit:https://blog.ochsner.org/articles/mardi-gras-strathttps://blog.ochsner.org/articles/mardi-gras-strategies-for-children-with-developmental-disordersegies-for-children-with-developmental-disorders
Comments