Having three kids with special needs means spending an incredible amount of time in doctor’s offices. Whether it’s a just a regular check-up or seeing a new specialty doctor, the appointments are part our weekly routine. 

My son Nicholas is very medically complex. At first he just had follow-up visits after being in the NICU for seven weeks. But then things started to get more complicated. The follow-ups turned into second opinions, which then turned into diagnoses. 

That first year of his life was challenging because I was trying to work at the same time. Luckily, I was able to take him to all the appointments he needed to go to. We had appointments weekly, sometimes multiple times in a day. Most doctors were nice, a few weren’t. Many times I walked away feeling good about what went on. Sometimes I left crying out of shock or anger. 

I still remember the first time I cried in the doctor’s office with Nicholas. I wasn’t able to breastfeed, because he had silent aspiration, but I was still pumping for him. When he was 4 months old, his eczema broke out and his nutritionist was convinced he was allergic to my milk. When she told me I had to stop giving him my milk, I was devastated. Pumping was the only thing I felt like was bonding us together. I couldn’t have a vaginal birth, and I couldn’t breastfeed. He had a feeding tube. He was only 4 months old and we were talking about switching to formula. None of this was normal or anything I had planned for my son.

She reassured me that I was a good mom, because if I was getting upset that meant I really cared. But that wasn’t the reason I was upset. I know my son and I knew at the time that my milk wasn’t the reason he had eczema. Needless to say, he still has eczema three years later and now we see a different nutritionist. 

We’ve also celebrated victories in the doctor’s office. Finally landing on the growth chart, “graduating” from seeing a certain specialist, and being comfortable with doctors instead of screaming every time he was touched.

When my second son Daniel was born with a lot of physical disabilities, the appointments continued. While his challenges aren’t complex, he still sees a lot of doctors as well. At one point, Nicholas and Daniel had 18 specialty doctors between them both. Of course, most of those weren’t consistent, but it was still a lot of doctors. 

It was impossible juggling my job and my kids, so I quit my job to take care of my boys full time. It was hard because I liked working and I liked my job, but it was just too difficult to do it all. 

There’s been two instances with Daniel where we had weekly appointments for a period of time; one for eight weeks straight and another for three months. Those were challenging because we had to stay committed every week in order to see progress. It was a relief when all of those ended.

My daughter Grace has the least amount of appointments right now, but still sees certain specialists. 

After three years we have the appointments under control. They only see some doctors once or twice a year. I can handle everything a lot better, but I definitely learned some things along the way. Here are six ways I make managing doctor appointments easier.

1. Organization and Scheduling
I use my calendar in my phone to schedule all of our appointments. It’s with me when we’re at the doctor’s office so I can schedule the follow-up right then and there. I try my best to transfer everything to a paper planner, but if I can’t it’s all still in my phone. I also try not to schedule too many appointments in the same week, but sometimes I don’t have a choice. Sometimes it’s a last-minute appointment or the provider is only there on certain days. It can get really overwhelming and emotionally exhausting when there are so many appointments, especially since my kids are really sensitive to new people and being touched. My phone is portable, keeps me organized and up to date with so many appointments.

2. Patient portal
Our doctor’s offices have a patient portal with reminder emails, texts, and/or phone calls. It’s really helpful to have those reminders, because we’re really busy. It’s also nice to be able to double-check if we’re actually being seen that day. The patient portal also offers medical history, immunizations, and communication with physicians. 

3. Sibling care
I couldn’t do what I do if it weren’t for my tribe. It’s been super helpful to me to have someone watch my other kids while I take someone else to see the doctor. It makes it easier for me to focus on the one kid at their appointment without any other distractions. If a family member is unavailable, I use my respite funds for a caregiver.

4. Weekly appointments
There’s been a few times where we had weekly appointments that lasted a few months or longer. It’s hard going every single week, but committing and staying on top of the appointments helped their progress. It’s good for them because it could possibly be preventing a surgery.

5. Communication
I try my best to be on time, but if we’re running late, I call the doctor’s office to notify them. They really appreciate knowing in advance if we’re not going to be on time to an appointment so they can plan for the next person. Most offices will take us after 15 minutes, but sometimes if they know, they will even try to work us in when they have time.

6. Advocate 
I’m my child’s best advocate. I know them better than anyone. I stand up for them and speak up when something seems off. I ask questions and I’m always in the know of my kid’s care. It’s OK to switch providers or get a second opinion. Sometimes things don’t work out the first time and that’s OK.