It's important that we are comfortable, informed, and empowered by our children's hospital stays and medical visits. Do you come away with the assurance that you were proactive and thorough in addressing your child’s medical issues? Or perhaps you feel dissatisfied with your level of preparation or communication with the doctor or staff? Do you feel that the doctor or staff was responsive? Whatever your past experience has been, you can learn some new strategies and tips in this issue of Bridges.

In this issue, we are fortunate to feature three perspectives on how to prepare for going to the hospital and medical visits:

Linda Chadderdon, who has years of experience with medical visits and hospital stays for her daughter, Faith, shares their journey and tips she has learned through the years.

Kerri Noyes has been her son’s medical advocate for years. Jake has complex medical needs and in the following Q and A, Kerri shares her approach to problems confronted by parents.

Dr. Christina Mulé, Ph.D., NCSP, Assistant Professor in the Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, University of Rochester Medical Center, joins us to address all the information and paperwork you can bring with you to make your visit most productive.

Happy Spring! Hope you enjoy the change in weather with your loved ones. 

Best to you and yours,

Maria Schaertel

My daughter, Faith, had her first hospitalization at five months old. She is 21 now, and I've lost count of how many times she's been admitted. At 19, she transitioned from children's hospital to adult care, and I can't express enough the shock we experienced with this. While her personal care needs didn't change, what the adult care hospitals have available to a person considered intellectually and developmentally delayed or developmentally delayed and with complex medical needs, changed drastically.

I recommend always having a "to go" bag - a bag that contains items specific to your child's care, items that you can afford to have stored in it. It will help you avoid trying to recall everything you need during a stressful time. Examples of the items specific to Faith's needs are:

1. 1. baby wipes
2. 2. diapers (her diapers are usually much better quality than those provided by the hospital)
3. 3. G tube cleaning supplies (Gastrostomy tubes are feeding devices that provide liquid nutrition, medication and other fluids directly into the stomach.)
4. 4. toothpaste and tooth brush
5. 5. hairbrush
6. 6. extra hair ties
7. 7. sippy cup
8. 8. bibs
9. 9. Hannah Montana Arm Immobilizers (these help to protect her IV and were given to her during a stay at Cincinnati Children's and yes, they are so old that the outer cover is Hannah Montana!)
10. 10. a "going home" outfit
11. 11. copies of paperwork on guardianship/advanced directives.
12. 12. Roku (Roku is a device that streams media - shows, movies, and music- from the internet to your TV)
13. 13. change of clothes and personal care items for me, as she can't be left unattended or advocate for herself

Then before you leave for the hospital, add a CURRENT list of medications, their doses, times and prescriber. Pack all their bottles of medications, just in case admission doesn't occur by the time meds are needed OR in the event the hospital doesn't HAVE one of their meds OR your child needs brand name and the hospital wants to dose with generic.

NOTE: If you are told that your child must take the hospital’s med and your child only responds to the brand name, ask to speak to the attending doctor to explain why the generic isn't appropriate and hopefully get their permission to use the medication brought from home. Be aware that the pharmacy will need to verify any home meds being used and will often request the home med be stored on the unit and not in the room. And don’t forget to add snacks and drink in case you miss meal time waiting for admission.

My daughter loves her Disney and Pixar films and these just do not exist in the adult care world. We used to pack a computer to stream channels but a lovely respiratory therapist suggested we bring in a Roku as patients she has who are extended stay bring with them! GENIUS! We now keep a Roku device in her to go bag and stream all her favorites on the hospital tv! Just like home.

What do you do when the doctor or staff are not responsive to your concerns?

If a doctor or staff are not responsive to my concerns, I keep asking!!! I know my child best, and if something doesn’t seem right I will not stop expressing my concerns. I will ask to be referred to a Specialist and explain what my concerns are. It is important to keep in mind, if you have a child who is medically complex, it is best to establish a trusting working relationship with the medical team. These people will be in your child’s life for a long time and it is best to work together and come up with answers.

What is the best way to communicate with medical personnel when there are challenges in communication?

If there are challenges with communication, one approach is to have someone with you who you feel comfortable with to help explain what the medical personnel are saying, take notes for you, and ask further clarifying questions.

How do you communicate that an interpreter is needed for an appointment or hospital stay?

When scheduling the appointment, ask for an interpreter. Make it clear that in order to best understand what the doctor is saying, you will need an interpreter present.

How do you communicate the need for medical transportation (if families don’t have a car or can’t drive)?

It is important to ask for a social worker when your child is admitted to the hospital. The social worker will be able to schedule transportation for follow up visits, admissions, etc. If you need help with transportation to and from appointments, I would ask when I made the appointment, if there is someone I can talk to regarding transportation to and from the visit.

“Sometimes I get the sense that families aren’t quite sure how to use their time with us or they don’t quite know how to prepare for their time with us. Given how challenging it is to get an appointment with specialists, I just want them to maximize the benefits as much as they possibly can.”

Here are Dr. Mulé's suggestions:

Ahead of the visit

Send in relevant documents that would be helpful to your developmental and behavioral pediatrics clinician to review. Include:

• early intervention, school-based, and private evaluations (i.e., psychological, educational, speech, occupational, and physical therapy evaluations);
• individualized family service plan (IFSP) or individualized education plan (IEP); and
• ongoing progress reports.

If you don’t have the means to send in these documents, give your school personnel permission to send copies directly to the doctor or hospital.

What to bring with you

• A list of concerns/questions you would like to review with your doctor
• Updated reports/documents that you could not submit ahead of the visit.
• Names of therapists/specialists who are involved with your child’s care.
• If you would like your provider to be in communication with any members of your child’s care-team, be sure to sign a release of information.

If your child is having difficulty waiting in the waiting room, please let a receptionist know and request that your child be roomed as soon as possible.

Plan to arrive 10-15 minutes ahead of your scheduled appointment time so that you have time to complete registration. It is helpful to review where you are going ahead of time to prevent the possibility of being late. 

JOIN US for Starbridge’s signature series to help your child plan for life after high school. We offer a safe and encouraging environment where your student can both dream and plan. Dinner provided.

Wednesdays, 5:00 to 8:00pm, April 26, May 3, 10, 17, and 24.

Location: Pieters Family Life Center, 1025 Commons Way, Rochester, NY 14623.

Registration is open to all students in Monroe County NY, ages 15-21, who are living at home and who have established OPWDD eligibility. A family member/guardian or family friend must accompany the student to each session.

For students with a Self-Directed budget, OPWDD requires your budget to cover the cost of participation. Please check with your Support Broker if you have questions about utilizing your budget for this program.

Registration is required. To register, contact Maritza Cubi by phone at 585-435-5481 or email mcubi@starbridgeinc.org. Space is limited and is available on a first-come basis.

Look for further information on our website.

Saturday, April 15, 2-4pm, Webster Public Library, Webster Plaza, 980 Ridge Road, Webster, NY 14580

For more information, please email: jennifer.paxson@libraryweb.org or call

(585) 872-7075 ext. 6144.



Over 30 agencies and organizations will be on hand! To view the complete list of agencies: www.websterlibrary.org/special-needs-parent-resource-fair/

FREE admission ~ first come basis, no reservations needed ~ many prizes

ROAR is accessible using the Culver Road entrance. The first floor of the club is accessible for wheelchairs and other assistive devices.

For questions or accommodations, contact Jean at 585-224-7248 or events@starbridgeinc.org

See you there!

Disability intersects with every identity. We stand with all races and ethnicities, religions, countries of origin, gender identities, sexual orientation, abilities and disabilities, spoken languages and all ages. We stand with everyone. We are grateful for the partnership with and support of every community.