Navigating a trip to the doctor’s office can be challenging for any family, but for parents and caregivers of children with autism, it often requires an extra layer of preparation and care.
Imagine turning what can feel like a daunting experience into an opportunity for empowerment and connection. We reached out to experts at Henry Ford Health’s Center for Autism and Developmental Disabilities (CADD) to learn practical tips and compassionate strategies to help you plan for doctor visits with your child.
Here, we have gathered nine tips for ensuring that each appointment is as smooth and stress-free as possible for both you and your child — and some broader perspectives about partnering with your child’s health care provider.
1. Seek a doctor who is experienced with autism
One of the biggest challenges is finding the right physician with the right expertise, says Sarah Peterson, manager and lead board certified behavior analyst at Henry Ford Health’s CADD. The good news is that it’s getting easier, thanks to more available resources and increased awareness.
Compared to earlier in her training, pediatrician Tisa Johnson-Hooper, M.D., who serves as medical director at the CADD at Henry Ford Health, says today, most physicians have children with autism within their practices. “With the prevalence of autism as high as it is, every clinician is likely caring for patients with autism,” she says.
Exposure isn’t always enough, however. Consider how your child’s doctor is making accommodations or modifying their practice to meet the needs of their patients with autism.
If you’re struggling to find the right health care provider, consider reaching out to Autism Alliance of Michigan. AAoM provides support for families impacted by autism, both through its MiNavigator program and Resource Directory, a database of specialists who are experienced with autism. Or, contact your insurance provider to see if they have additional information to help you make your choice.
Some health systems, like Henry Ford Health, provide detailed information on their websites about physician specialties. And don’t discount the value of word of mouth, says Peterson.
“Word of mouth is definitely a big benefit in the autism community because it can be difficult to find providers. So once somebody does, they want to share that information,” Peterson adds.
2. Consider the pros and cons of the waiting room
For some children, the waiting room can be a highly stimulating environment filled with games, toys, bright colors and screens. Whether or not that’s a good thing depends on your child’s preferences and sensory needs.
For young children, the waiting room can be too much of a good thing. “Having to pivot from that space oftentimes will trigger a meltdown because there’s always a screen in that waiting room or some activity or toy that can be engaging. We want it to be engaging,” says Dr. Johnson-Hooper. But, she adds, for kids who do not transition easily from a preferred to a less preferred activity, the waiting room can be a trigger. And this creates stress for the parent.
That first impression of a crowded, noisy waiting room can remain throughout the lifespan. “I know definitely our adolescents may communicate that it really increases their anxiety being in that crowded space. Even before getting into the medical visit, that’s a place that can set the tone,” she says.
Don’t be afraid to communicate your challenges to the provider or the office staff, suggests Dr. Johnson-Hooper. She says when families share their experiences, the staff may consider alternatives, like using a pager, creating a separate quiet space to wait, moving directly to an exam room or suggesting appointments during slower times of the day and week when the waiting room is less hectic.
It may feel like you’re asking for individual modifications, but your requests can help other patients, too, says Dr. Johnson-Hooper.
3. Lean into your ABA team to prepare
Annual well-visits just don’t happen often enough to become routine for your child. Put the appointment on your calendar and inform your child’s ABA therapy team two-to-three months prior so they can help your child prepare.
Share with your child’s BCBA any aspects of previous visits that caused anxiety. The BCBA can create a plan and even include some things to work on at home, says Peterson. “For example, looking in their ears. Parents can touch their child’s ears, getting them used to having someone look in. If you have an ear thermometer, it mimics the same instrument a doctor will put in their ears,” she says.
Anything your child can practice before the visit will become more familiar. Be sure to ask, rather than assume the ABA team works on these skills.
If you have less than a couple of months to prepare, inform the ABA team so they can practice anyway. “The more practice we have, the better the outcome,” Peterson says.
4. Advocate for your child
Ask your child’s doctor to communicate openly so your child knows what to expect. “Coming up with creative ways to incorporate a kiddo in the exam is always my rule,” says Dr. Johnson-Hooper. This is an important trust-building measure.
If your child reaches their tolerance limit for one visit, don’t be afraid to let the doctor know. Then schedule a second visit to complete the exam, if necessary.
Or, if you know your child will struggle with one particular aspect of the exam, save it for last, if possible — even if it’s typically one of the first measurements the medical team likes to get, such as height or weight.
5. Use technology to your advantage
There are at least two ways technology can make your child’s experience better. First, if your child doesn’t understand a particular aspect of the doctor’s visit, you can look it up on your phone, in real time, to provide your child with a visual.
“Depending on the level of language they have, they might not fully understand when the doctor says they will give a vaccine, but a picture is much easier to understand,” says Peterson. Same goes for listening to your child’s heart or lungs, or any other aspect of the visit.
Second, use telehealth whenever possible. If your need is urgent or you know your child will not tolerate an in-office visit, see if telehealth is an option for you.
“Telehealth provides a really wonderful tool, but it’s about using all your tools in your toolbox and recognizing that everything doesn’t have to be done at every visit all at once,” says Dr. Johnson-Hooper.
6. Let the practice know when you need help
No one likes last minute surprises, so be sure to confirm the date and time of your appointment a few days before, just to be sure there haven’t been any changes. Let the staff know your preferred way to receive appointment reminders, and be responsive if changes need to happen.
If transportation is a challenge, let the medical staff know. This information helps everyone in the long run. “As a patient, and this may be a tall order, you have to be able to bring forth these concerns with your provider,” says Dr. Johnson-Hooper.
From transportation to needing written information provided in your first language to any challenges in accessing a pharmacy — let your provider know and brainstorm solutions.
7. Communicate openly about what’s working and not working
A trusted provider-patient relationship is built on communication. Ask for accurate, understandable information from your child’s doctor, and be prepared to share openly and honestly anything that would help make your child’s experience better.
Your doctor may not have an immediate solution, but should be willing to brainstorm with you to find something that works.
Be willing to provide honest information about other services your child receives, too, because this can help your child’s provider — and future patients.
“I once had a parent tell me that regardless of what she hears in the community or at the child’s school around advice or recommendations, she expects me to be the authority in that recommendation,” says Dr. Johnson-Hooper. “This was a parent who really helped me pull together resources for us to review that we can now disseminate generally.”
As a parent and as a consumer of health care, Dr. Johnson-Hooper advocates for everyone to clearly share information, both about their child and also what could make the doctor visit and the doctor-patient relationship more helpful and beneficial.
8. Ask for and commit to a partnership
Consider your child’s health care provider as an ally and ask if they are willing and able to partner with you. Autism should be no different from any other diagnosis, says Dr. Johnson-Hooper, and you want a primary care doctor who will team up with you on all aspects related to your child’s wellness.
“Have the conversation about what you feel you’re going to need in partnership with the primary care provider,” she explains. While her practice is now well-equipped to meet the needs of their patients with autism, it hasn’t always been. “It really is parents being willing to communicate what is working and not working. It doesn’t mean a practice is going to change everything for their child, but they can certainly brainstorm.”
Your child may have other services, such as ABA, speech and occupational therapy. Sharing this information with your child’s primary care physician will help them better know your child and better coordinate their care.
“Oftentimes, people think the primary care is just the one to see when your child is sick or has a possible ear infection. But primary care for all children occurs during sick and well visits. It should be comprehensive care addressing caregiver concerns, both primary and specialty care, as well as daily living and school, like the contents of the child’s individual education plan. This care should be coordinated and result in a clear communicated plan of care,” says Dr. Johnson-Hooper.
9. Give yourself grace
Not every doctor visit will go perfectly — and that’s OK. Recognize the small wins for you and for your child and take comfort that you’re doing your best for your child’s wellness.
“You have a full year before the next one, hopefully,” says Peterson. “It’s not something that happens routinely, so you can’t practice all the time. Just be gentle with yourself.”
Expertise from Henry Ford Health’s Center for Autism and Developmental Disabilities. Learn more at henryford.com/services/autism.
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