Pushed to Crazy to Help My Autistic Son

“Our Nurse Practitioner said she would not speak with you. She doesn’t even know you. She sees no reason to speak with you outside of the appointment.”

“You can leave your son in the waiting room for five minutes and talk to the nurse before.”

“Our Nurse Practitioner has no time to speak with you between now and the end of February. She also has no time to read your emails.”

‘You can come to the appointment instead of your son and speak to our Nurse Practitioner but then you’ll have to wait another four months to bring Cooper in.’

These tidbits are from a desperate conversation I had yesterday with a Triage Nurse at an immunology clinic in Minnesota. A person that was busy and had no time to talk to me. A person that didn’t care. A person that didn’t care about hearing me out or understanding autism.

I’m often amazed by the exceptionally good healthcare and exceptionally bad healthcare we have received over the years. I’ve had doctors call me at home and check on how Cooper is doing and ultimately how I am doing. I’ve had doctors sit on the floor with my son. I’ve heard sentences like, ‘Tell us what you want mama. You know your son. How can we help Cooper?’

I wish I could tell you that it is all like this. It is not. Nor is it the norm. At least not for kids like Cooper.

If you have a child like my son Sawyer that typically visits the doctor once a year for his Well Child Visit, consider yourself lucky. If you’ve never begged a doctor to help you, argued with a medical professional over the level of care they are providing, or sat on hold for hours, you are lucky. If you’ve never had to spend you whole work day scheduling appointments or used all of your vacations and sick days on medical appointments for your child, you are lucky.

If you’ve never been desperate on how to help your child, you are lucky.

Because, there is bad healthcare. Really, really bad healthcare. I’ve had doctors that don’t even examine Cooper and just prescribe medication. I’ve had doctors who refuse to listen to me. I’ve had doctors that offer the same course of treatment that they would for a child without autism. Courses of treatment that would NEVER work for him.

No one wants bad healthcare. You may even say you won’t stand for it. But more often then not, you are trapped with it. It’s not like there are countless specialists out there. It’s not like we have endless amounts of time to wait for better care. Most of the time, you are so thankful to get an appointment that you deal with it in hopes that this will be the one person that can help your child.

Seven years in, I’m surprised at how hard it is to help my son at times. I’m surprised at how we are treated. I am surprised at the terrible people we have encountered.

Long story short, I think my son may have an autoimmune disorder. I think. I do not know for sure but I know I want to rule it out.

A few days ago, we had a terrible, but standard, visit to his ENT. It was bad. It was typical. We have been battling chronic ear infections for years.

After I dropped Cooper at school, I went to work. Just like, I do every day, five days a week. And boy was I rattled. Restraining your child on the floor of an exam room after he destroyed it does not do well for the nerves.

I immediately started in on my phone calls. Like I do everyday. I am an advocate, a nurse, a specialist, and a therapist for a vulnerable boy without a voice.

First, I called and made the appointment for the cat-scan. I explained that Cooper is autistic and cannot fast so he needs the first appointment of the morning. The notes had been put in wrong by a new staff person and the scheduler didn’t understand why Cooper would need to be put to sleep for the cat-scan. She told me she’d call me back.

Then I called the immunologist we are going to see in three weeks. This is the appointment we’ve been waiting for. We made it over 4 months ago. I was told by other mamas that this doctor is the one to see. All you parents in my shoes know…the gold standard. The one that understands autism. The one that can really make a different in your kids life.

I asked to speak to the triage nurse. I had two relatively simple questions. Only, there are no simple questions when it comes to my son’s care. I’ve learned that.

This isn’t my first rodeo. I knew this would be like pulling teeth. Without Novocain. But, I still called and said a silent prayer that the person I spoke with knew an autistic person because then, then they would understand. Or at least try too. I pasted on my fake smile, took a deep breath, and loaded up on some good old fashioned Minnesota nice.

I explained that my son has nonverbal, severe autism and is highly behavioral. I gave a brief overview of how he struggles at appointments. I then made two requests.

I first asked if his blood draw could be done when he is under anesthesia for his upcoming cat-scan. You would’ve thought I asked for the sun to be removed from the sky. The sigh of annoyance that I received could be heard round the world.

I cautiously kept going.

I explained that it will take five nurses to hold Cooper down for the blood draw. I explained that one of us will get hurt. I explained that Cooper’s arm will be destroyed from the thrashing. I explained that even worse, he will refuse to go back into their clinic once this is done. He remembers everything.

I begged. I pleaded. I asked if she could please ask. This will be the best thing for Cooper.

I could tell she did not want to ask. My question is different than the normal way they do things. It was different than the ‘easy’ kids.

Another thing I’ve learned as my son’s mom…It’s hard to get help for a challenging child. When my verbal son Sawyer says something hurts at age five, people listen. He communicates. He’s sweet. He’s calm.

When my nonverbal son screams, hits his head and destroys a room, people’s defenses go up. The help is harder to find. That is a fact.

I then asked my second question…the one I thought was the easy one.

I asked who we were seeing during his appointment on the 21st. I asked if I could speak with her before the first appointment to go over Cooper’s medical history and signs of an autoimmune disorder. It could be today, tomorrow, next week, same day or in the middle of the night. I’m available. I explained that we just left an ENT appointment and what had happened.

I explained that I am really looking for a clinic/doctor/team that will help us. I explained that I wouldn’t be able to talk about Cooper in the appointment and I really want to talk thoroughly about his behaviors, symptoms, and his history.

I explained that I won’t be able to do that with him in the room and I am desperate. I really want this to work. I want to figure out what is wrong.

I heard the sigh again. I heard the annoyance. She told me she’d call me back.

I want you to know I am not needy. I don’t cry wolf at anything. I am polite. I am patient. I am friendly.

And I am a mother who has been driven nearly crazy trying to help her kid.

If I call and advocate for my son, the advocating is warranted. I have too much going on in my life to pick up the phone for no good reason.

I was asking to be able to communicate with the medical professionals that will be making decisions for my nonverbal, autistic, challenging, vulnerable son who is in pain. You would have thought I was asking for a million dollars.

She called me back later that day. She told me that no they would not do Cooper’s blood draw during his cat-scan. I asked why. She said, ‘because we won’t. We don’t do that. We never have.’

OK, I lost that one. I knew it was farfetched. I knew it would take phone calls and collaboration and truly putting Cooper’s care at the center.

I then asked about the chat with the nurse before his appointment so I could give a thorough history. She said no.

‘Our nurse practitioner will not speak with you before. She does not know you.’

She said I could leave Cooper in the waiting room for a few minutes during the appointment.

I explained the Cooper is autistic. First, he cannot be left alone. Second, even if dad is there he will not separate from me. Appointments are very stressful for him. And if I do try and force the separation, he will be extra anxious and confused during the appointment.

I asked if I could send an email. Or if I could speak with ANY nurse that could relay his symptoms, signs, struggles and history. I explained that most of the ‘real’ Cooper wasn’t in a medical history chart from a doctor.

She sighed. She said she’d ask again. And she hung up.

She called back later that day. She said no again. ‘Our staff has no time to speak with you. Nor do they have time to read an email from you.’

Again, she said, ‘Our staff doesn’t know you.’

She said I could come in during Cooper’s appointment time and speak to the nurse but it would be another couple of months before Cooper was actually seen then.

I wanted to say a dozen things. I wanted to cry and scream and tell her this was the worst customer service I had ever received. I wanted to go off about Person Centered Care. I wanted to cancel the appointment. But mostly, I felt sad for my son. And I felt really alone.

Instead, I shut my mouth. And I hung up.

With almost everything with Cooper, I either win, and by win I mean Cooper is seen and heard, or I give up.

I don’t want to go to this clinic. I don’t want to see these people. I could pretend I just got bad customer service and that it was an isolated incident. But I know, that is most likely the clinic’s mantra. They aren’t going to go above and beyond. They don’t know me. They don’t want to know me. They don’t want to help Cooper and give him his best care.  They want to check boxes.

Here is the deal though. We are trapped. We have to keep the appointment. We’ve waited four months now. This is our only option.

The last seven years of my life has been lived in waiting rooms. It has been spent on the phone making appointments and arguing with insurance companies. I sweet talk schedulers to help us. I beg nurses to listen to me.

And half the time I take what is offered to us because rude, half assed help is better than no help.

If you are a desperate parent…I understand. I’m sorry. It’s not fair and it’s wrong.

You and I both know it shouldn’t be like this.

I just want to help my kid feel better. It’s that simple. And I shouldn’t have to go crazy to get him help.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.