By Maureen Almeida, RN and Mom

It was January 3, 2023. The day that the kids headed back from a long Christmas vacation and my hubby and I were getting a workout early before the kids got up. I finished before him because I was recovering from shoulder surgery and my ability to exercise was a bit limited to say the least. I went upstairs to wake up Evan (our, then, 7-year-old non-speaking, autistic son). I opened the blinds and heard what sounded like, his nose being very stuffy. I called his name, and he didn’t react at all, just stared to the right. I started to panic, called my husband upstairs and then the ambulance. Being a nurse, I would’ve thought I could recognize a seizure when I saw it, but none of this looked like the seizures I had seen. The paramedics arrived, brought Evan to the ambulance, where they started an IV and put some oxygen on him. Everything happened so fast that before I knew it, we were at the Emergency Room. The paramedics were giving the nurses their report from the ride, “he’s done seizing”, they said, “back to baseline”. Neither of which I believed to be true.

I think they assumed that because he was non-speaking, that meant he wouldn’t engage. I promptly told the staff that he wasn’t breathing normally for him and that I thought he was still in mid-seizure. They placed a breathing tube in to make sure he could get oxygen in the best way possible while they put him through every test and scan in their capabilities while we waited for the Boston Children’s Ambulance to arrive.

Off we went, with the most amazing team, to Children’s. On the ride, I tried my best to give the nurses the full picture of Evan and who I knew him to be before his seizure. I had no idea what would be asked of us in the days coming but we strapped in for the ride. The team descended on him as soon as we arrived straight to the ICU. Applying every monitor you could imagine. Stickers all over his head to check the brain activity, heart monitors, more IV’s, the works. Then I had a phone call. It was Boston Children’s dental team, confirming his dental surgery for the next day.

Because Evan has such difficulty with sensory processing, brushing, and maintaining his teeth has been a huge struggle. He cracked a tooth and was scheduled to have it removed along with a lot of other dental preventative treatment. I answered the phone and told him that it would obviously have to wait. They apologized for the interruption, and I went back to praying that our little boy would be ok.

The hours and days that came next were a blur of tests and visits from doctors. My husband and I sat sleeplessly next to him day and night. Eventually, the neurologists came in with a final report of his EEG explaining that he would have to go home with emergency medication as well as maintenance medication to prevent another catastrophic seizure. They assured us that he would be ok and planned for him to have his breathing tube removed. I thought to myself, well, if he already has the breathing tube in, and the dental team was supposed to see him for a surgery that next day, then it was worth asking… why couldn’t they bring him to the operating room? My mind was all over the place. “How long will we have to wait to have this done? Will he get a dental infection while we wait? That’s another thing that’ll need medication that he won’t take! We will have to put him through ANOTHER traumatic trip to a hospital”. The nurses and consulting doctors were completely on board! They said, “we just have to call dental”. That would be the biggest hurdle, they reported.

Being an operating room nurse for 20 years, and an autism mom for 7, I was ready to advocate like I never had before. The dental resident tried to tell the nurse that it wasn’t possible. I told her, “Make them come up here, next to myself, my husband, and Evan and tell me themselves”. They sent a very meek, inexperienced, “doctor” to tell me. I invited her into Evan’s ICU room. I made my case, telling her it would be more dangerous to take him home and risk an infection which could trigger another surgery, than to do it now, in a controlled environment where his team approved. After she made many phone calls, they agreed. The ICU cheered when they found out! Evan got his tooth removed, plus a cleaning and some fillings that needed to be done. They removed his breathing tube, and we began the long 24 hours until his discharge. Phew!

Advocacy is hard! And boy, do we have to do it as a full-time job with our kids. I’m not exactly sure if any of us knew what we were signing up for when were handed these amazing babies. We had no idea what would be asked of us, day in and day out. Whether it’s out in public and the stares that come our way, at the IEP table with the education team, or in a hospital/doctor’s office, we can all agree, it’s a tall order. But the more we practice, the better we get at it and the more that we know that we know our children best, the more we feel comfortable speaking up.

If you’ve ever sat at an IEP table (and I know you have), you’re familiar with the notion that if you don’t ask, you don’t get. This applies to healthcare too! The worst-case scenario is that they say no, so why not just ask, or should I say… collaborate! The medical team is super important, but caregivers are equally as important and we all have the same goal, to get the best outcome for our kids. But at the end of the day, we are the experts in our kids. We know what triggers them, what comforts them, and everything in between. And we can’t expect each provider to be anticipating the intricate needs of each individual child, so we need to have the confidence to help them.

Here are some things that I’ve asked for and/or suggested over the years that have helped Evan navigate his experiences in healthcare and offices better:

• Write questions down ahead of time (because we all know how distracted we become during a visit)

• Call ahead to see if the MD/provider is running on time.

• Ask if we can wait in the car rather than the waiting room before going into the exam room

• Request vaccines be given in the car

• Ask if there are any disposable tongue depressors, dental mirrors, etc, that can be obtained ahead of time, or used for practice or familiarity for future visits

• Take height/weight, temperature (or even blood pressure and pulse) at home prior to coming in

• Make them feel safe. We bring Evan in a stroller to the office. It’s his safe place and he feels secure while we chat with the doctors.

• Bring snacks, sensory items, AAC device, iPad, for entertainment.

• Ask if a child can be brought into the office on a casual visit. We bring Evan to the dentist every 3 months instead of every 6 so he can be exposed to the routine more frequently.

What helps Evan be successful in an appointment can be very different than other neurodivergent kids. Some other children do great with things like social stories and videos to prepare. There are all kinds of accommodations that are in our toolboxes for our kids. What you need to do is to have the courage to ask for them! Whether it’s asking for surgery that they need or pushing them in a wagon into the office, it’s all advocacy and you have the power to do it!

You, the caregiver, are the superhero!

About the Author: My name is Maureen Almeida. I’m a mom to Evan (8), who is autistic, non-speaking, with high support needs, and to Jakob (10), and neuro “spicy”. I am now, a stay-at-home mom of 3 years. I’d been an RN for 22 years and have primarily worked in the Perioperative setting. I’m married to my husband of 12 years, Nick, and we live in Fairhaven, MA.