Ways to Make Medication Management Easier for Special Needs Parents

Let’s look at some practical ways to make medication management easier for special needs parents.

These tips can help from the time before the first doctor visit through the maintenance stage.

I am writing this post from my experiences as a special needs parent. I am sharing strategies that have worked for me over the last 17 years. Please note, I am not a doctor. It is important to consult with your doctor on medication decisions. (See disclaimer.)

Importance of Making Medication Management Easier for Special Needs Parents

Medication management can be overwhelming. 

Do not get discouraged if the first few medications are not the right fit. Often, you may need to gradually adjust dosage strengths. Other times, you may need to taper off medications before starting a new one.

You will need to keep track of daily doses. You also need to make sure you have enough doses on hand. 

If you have multiple medications, simply filling them can be time-consuming. At one point, I was at the pharmacy at least twice a week. I also had to make several monthly phone calls to get the medication covered.

Medication management can be stressful.

Some medications are relatively easy to obtain. Your pediatrician may be able to prescribe and monitor them.

Often, you will need to find a specialist. More specialized medications often require waiting for an appointment with a specialist. These specialists are often very busy. You may need to travel far away from home. You may have long spans of time in between appointments. 

There is still much stigma surrounding mental illness and medication. You may have internal struggles with yourself. You may also have disagreements with a spouse or family members.

Medication management can be a new skill.

Medication management is probably new to you.  

Often, by the time you are exploring medication, especially for emotional and behavioral concerns, you have already been through many stressful experiences. 

By the point of adding medication, you may  have already learned several new skills. For example, a new language of special needs parenting (such as IEPs and several diagnostic terms). You may have learned how to find therapists and made appointments with at least one doctor.

You can learn this new skill too.

Ways to Make Medication Management Easier

Let’s look at some specific strategies. We will look at initial and daily steps. We will also look at ways to make pharmacy visits easier. Lastly, we will look at how to make the most of doctor visits.

Initial Steps

There are steps to take before starting medication. These include finding the right specialist, taking notes and data on areas of concern, and meeting with the doctor.

Medication can start for some children at birth. For example, one of my children had a known health condition before birth. Specialists saw him before he came home from the hospital. In this case, a specialist prescribed medication right away.

Other times, medications come after several different doctors and tests. It can feel exhausting waiting for medication. But it is important to take these initial steps to narrow down what medications to try first.

Suggested Strategies

Action Step: Talk with your family doctor about your concerns. Ask for referrals to specialists. Make appointments as soon as possible. There is often a wait-list so call and make the appointment. In my area, initial testing has wait lists of six to nine months. Some practices have cancelation lists. If possible, get on a waitlist for two or three doctors.

Action Step: Look into local therapies and services. Often, doctors will want to see that other measures are in place. For example, if your child has had several months of behavioral therapy with limited progress a doctor may be more willing to start medications. If your child’s therapist cannot join you for the doctor meeting, ask for a write up to share with the doctor.

Action Step: Be prepared to provide a background history of concerns and previous and current supports (ex. an IEP at school or therapy). If previous medications have been tried, gather that information for the appointment. Be prepared to highlight the main concern and what you are hoping to gain from medication. For example, main concerns could be aggressive behavior at school, self-injurious behavior, or extreme sleep disturbances. You may want to reduce aggression, decrease self harm, or improve sleep. This helps focus the appointment for you and the doctor.

Helpful Tools

Keeping a log of behaviors and interventions is important in this phase. When you get into the appointment, it can be very helpful to have a written log. This reduces the need to rely on memory. It also provides a clearer picture for the doctor.

Daily Steps

Once you have started medication for your child there are still several steps to take. This includes making sure medication is taken regularly and keeping data on side-effects and improvement.

Suggested Strategies

Action Step: Create a log of the medication. Taking a photograph of the medication bottles is helpful. This information is useful for you. It also helps to have for other doctors or in an emergency situation.

Action Step: Keep a list of when and what medications to give. While you may be starting with one medication at a time, several medications are once a day and others twice. As you make changes, updating a handy list of medications is helpful to have. This is true even if you use pill dividers. It helps with setting up medication for the week and to make sure you are up to date on changes. In the event of an emergency, someone else can help with medication management.

Action Step: If your child goes to school, make sure the school nurse is aware of the medications and changes. If medication will be given during school hours, ask for the school rules. Often, schools do not allow medication to be sent in on the bus. You may also need to ask the pharmacy for a second medication bottle so that you can have one for home and one for school.

Action Step: If possible, keep a backup dose in a safe place in your car. This is useful if you realize during the school day that a dose was missed. It is also helpful if outings go longer than expected.

Action Step: Use pill organizers to monitor that medication was given. They also help streamline the process. Put the pill organizer in the same, obvious place to help remember to give medications. Using alarms on your phone is also helpful for making sure medication times are kept.

Helpful Tools

Medication organizers are very helpful. If your child takes different AM and PM medication, a pill organizer with different day and night colors is very useful. The first organizer below is also nice because the individual days pop out of the case. If multiple children take medication, I recommend using two different types of cases to avoid confusion.

At the Pharmacy

Filling some medications can be challenging. From insurance red tape to high copays, there are some ways to make this part easier.

Suggested Strategies

Action Step: Find a pharmacy nearby and preferably with a drive through window. Get to know the pharmacy team during your interactions. Enroll in any of the pharmacy programs designed to help you. These could include rewards programs, color coded bottles, and text alerts when medication is ready.

Action Step: If there is a copay for a medication, ask the pharmacy if there is a generic brand or way to get a lower copay. Sometimes they have to make a call in the insurance or the doctor to make this happen. Often there are preauthorization steps they can help with as well.

Action Step: If there are any changes to medications since you last visit, make sure what you wrote down from the doctor visit matches the information they have on file. If there is a change in dosage, the pharmacy may need to contact the doctor’s office.

Action Step: The pharmacy team can often double check for any potential problems of taking medications together. For example, if your child has a cold or needs to take a temporary medication they can double-check that the medication is safe to take with the regular prescriptions on file.

Action Step: Some medications require cutting larger pills. Often this is easy to do at home, but a few pills over the years have been quite challenging. Calling ahead and asking for them to be cut is often something the pharmacy team is willing to do.

Helpful Tools

Even if your pharmacy is willing to cut pills for you, having a pill cutter on hand is helpful. Sometimes medication dose changes will occur before you are able to get a refill. You may then need to cut pills you already have on hand.

During Doctor Visits

Teaming up with your doctor is an important step in medication management. You can take steps before initial and follow up appointments to be prepared. There are also steps during the appointment to make sure you get the most out of the visit.

Suggested Strategies

Action Step: Whether this is an initial visit or a follow up visit, having a log of concerns is helpful. You can note when, where, and how often/intense issues are arising. For example, you can note how often your child is being aggressive, engaging in self-injurious behavior, or reporting depressive symptoms.

Action Step: Write down questions before the appointment so that you remember. You can also take notes during the appointment. Write down medications and their directions for later. Ask what side-effects you should keep an eye on and what you should do if they occur.

Action Step: Be aware that often doctor’s will make only one medication change at a time. This will allow them to better track which medication is having an effect on a targeted behavior.

Action Step: I like to get a brief update from my children’s teachers and therapists to share with the doctor. We use a case manager and are able to email this before the appointment.

Helpful Tools

Bring a notepad to jot down questions before, during, and after appointments. You can also bring your daily log of observations. This is especially helpful as the doctor looks at what medication dose changes need to be made. It can also highlight any concerning side-effects.

Ways to Make Medication Management Easier for Special Needs Parents: Summary

Today we looked at ways to make medication management easier. This can have a positive impact on the whole family. These strategies can help reduce stress. You can decrease time focused on medication. All while still reaping the benefits.

Becoming more familiar with Special Needs Acronyms can also make medication management easier.

Learning about your child’s diagnosis is another important step. This helps in medication management. It also helps your overall special needs parenting journey. For example, you may be interested in learning more about is trichotillomania. 

Medication is often only one piece of the care plan. You may also find some helpful information in Creating a Calmer Home for Special Needs Families.

If aggression is a concern, you will find more strategies in When Your Child is Physically Aggressive.

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