Special Needs Parenting and Anxiety, the Impact of Anxiety on Decision Making and More

The other day I wrote a blog titled, "Special Needs Parenting and Depression: It's Normal" and I have received rousing appreciation from everyone who has read it. I already planned to do a similar post regarding anxiety, so I hope this helps people as much as the previous blog.

Personally, I have battled anxiety since I was a child. The constant worrying about if I said the right thing, did the right thing, could have done or said something different that would have changed the outcome of a situation, the heightened heart rate, throwing up, headaches, etc. I've dealt with it for a long time. Prior to Jaxson being born, though, I was able to be medication free for a number of years. After he was born, I tried for a few months, but when his second surgery was scheduled, I went to the doctor for help. His first surgery happened while he was in the NICU, at 5 weeks old, when he had his feeding tube placed. His second surgery was when he was 4 months old, and it was a big one: reconstructive skull surgery. He was born with syndromic craniosynostosis. At birth, both of his coronal sutures were fused. He also had hydrocephalus and a Chiari I malformation (part of his brain pushed down into his brain stem). In order to fix his skull the first time, they literally cut out part of the back of his skull in a crescent moon shape. They replaced the bone that was cut, only put it farther back so as to create space for Jaxson's brain. It was terrifying, and I knew in advance what they would be doing, so I wasn't taking any chances. I went back on anxiety and depression meds to get me through.

Jax and me, before his first skull surgery

Jaxson, post-Cranial Vault Reconstruction

Even so, with all of that, I could not stay with Jaxson his first night of recovery. It's probably my biggest regret with Jaxson, but at the time, it was what I needed. Jayson, my husband and father of both of my kids, stayed with him. Jaxson cried for 30 hours. I was throwing up in the bathroom in his room, even after one of the nurses snuck me a Zofran. The anxiety was completely overwhelming. Jaxson's eyes would be swelled shut for 3 days, his face was so swollen he was almost unrecognizable. Later, when things settled down, we joked that he looked like Stewie from Family Guy, but at the time, my heart was broken.

That was just the first skull surgery. Jax had 2 more the following year after two more of his sutures fused. His lambdoid and sagittal had been open initially, but the lambdoid was fused and sagittal fusing by the time Jaxson was 1. Two more reconstructive surgeries, this time involving distractor pins which I had to turn at home for 30 days. Talk about awful. I have no idea how we made it through that month without completely falling apart. As stated in the previous blog, Jaxson has had 12 surgeries overall. His brain and skull surgeries were tough and scary, but his heart surgeries came with a whole new set of concerns and risks. Those surgeries, and there will be more, are by far the hardest.

Jaxson's distractor pins.

Jaxson after his second open-heart surgery

I've described the definition of anxiety in a previous blog, so I'm not going to do that again. The purpose here is to discuss anxiety as it relates to raising a special needs child. The background above is solely for the purpose of people understanding where I'm coming from, what our family has been through, and why this is important.

There is a whole new set of anxiety problems that happens when you have a special needs child. It's no longer "simply" social anxiety, performance anxiety or any other form of anxiety that can occur in otherwise "normal" people. The anxieties are now worries about your child. What's wrong with my baby? Why is this happening to my baby? What will my child's future be like? Will he/she have to undergo surgeries for the rest of his/her life? Will my child have a normal life span? Will my child ever be independent?

Those are just samples of questions we run through our heads on a regular basis. When we are in crisis-mode, something that can happen at any given moment, the questions change. They become more serious, more intense, and they come in a rapid-fire fashion. This makes it difficult to not only listen to what the doctor is telling you, but also your ability to comprehend that information. And if you aren't comprehending all of the information, how can you make the best decision in that moment?

Jaxson and Jeffrey today, happy and
(mostly) healthy!

The answer is, you can't. Well, that's not fair. The answer is, I haven't found an answer on my own. Anxiety impairs cognitive function and decision making ability on its own, and when you add extra factors, it makes things even more difficult.

How, then, do you go about making decisions when you know your brain isn't functioning properly? I will tell you what I do. When doctors are telling me things and it feels like I'm blindsided or it's coming at me so fast I can't grasp it, I listen the best I can. I ask the questions I think of. I take notes. I tell them to go ahead with their plan. Then I go home, I breathe. I research. I discuss with other members of our community to see if anyone else has experienced this before, and if so how did they handle it?

Once I feel like I finally have a grasp on what is happening, I will call the doctor to ask more questions. Or send a message via MyChart depending on the doctor. I make sure there's no stone left unturned, and if someone can't answer my question, I get a second opinion.

Here is what has helped me the most in dealing with anxiety at the doctor's office: Remember that doctors are just people! They have a higher education and they know a lot more than we do. But not every doctor is the be-all, end-all. Not every doctor will look at imaging and its report and come to the same conclusion. Not every doctor will make you feel like they care, or that they have a vested interest in your child's health. When you come across those, FIRE THEM! You are NOT required, nor are you obligated to do anything a doctor tells you. If you don't agree, get another opinion! If you are unsure how to go about this, please ask me. I've gotten second opinions on Jaxson's head and heart, just to make sure all was going as it should. I'm happy to say that our hospital has been able to complete everything Jaxson needs, and when I've consulted other places, they've agreed with the treatment plan. Not everyone is so lucky.

Doctors are just people. They are not intimidating, even though some try. Most of their arrogance is unwarranted and comes from the money they make and not the job they do. In my experience, the top doctors in every field aren't just good at their job, but they actually care about their patients.

The next time you feel your heart skip a beat and then flutter around your chest, or you find your stomach in your throat, or that nagging tension headache rears its ugly head when you're getting information from a doctor, just stop for a second. You can even tell the doctor to stop talking! Take a deep breath and settle down your heart. Then resume listening and taking notes, but again, don't let the appointment be the end of it. With anxiety, you may miss things that are said, even if you are taking notes. All you can do is be the best version of you, and if that means taking a step back to contemplate the next course of action, then DO IT!

Emergency situations work a little differently, and during those, I can say that everyone has their own coping technique. For me, in an emergency, I won't notice my anxiety until everyone is safe and cared for. Then my stomach will hurt and a lot of times I throw up. At that point, once I can get my body calmed back down, I can replay the events that occurred and determine if anything needs to change. When you're inpatient, there's always a charge nurse on the floor and an attending doctor. If you don't like something that's happening and your anxiety is through the roof, SAY SOMETHING! You can even ask for another doctor to come in, or contact one of your child's specialists to come by and assess the situation. Most doctors are more than willing to accommodate the needs of families, but they can't do that if you don't tell them you need something. Don't let your anxiety, your fear of their response stop you from speaking up!

I am not always good at that last bit, I will admit. My anxiety will stop me from asking questions because what if I'm just being paranoid? What if this isn't the right question? What if I'm just making myself crazy for no reason? That fear alone will lock me up when the doctor is in my presence. Which is why I always take notes and I always call or send messages when I have other questions. However, when your child is inpatient, you generally don't want to wait on a response via phone or message. I've learned over the course of Jaxson's stays, that doctors and nurses are almost always receptive to your questions and will not make you feel like a crazy person. Most hospital staff and faculty have a love for what they do, and they would rather you ask questions than be angry later!

To recap, anxiety has been proven to impair cognitive function and decision making ability. As the parent of a special needs child, you have anxiety at almost every appointment and definitely during inpatient or emergency visits. It's okay to be anxious about these things, you are dealing with your child's life, health and well-being! Being anxious, like being depressed, is normal. Accept that it's part of your life and that it will be for many years. Then make a plan that works for you to combat said anxiety. Whether you follow what I do, whether you take pieces from it and add others, or whether you find your own method that works for you, make a plan. And stick to that plan!

If you are like me and battle anxiety on a regular basis, I would love to hear from you! What works for you? What doesn't work for you? What are your triggers? How do you overcome anxiety in an emergency? What works for you might not work for someone else, but it also might help a different person find what they need. Comment below with your own experiences, you never know who you might help! It could even be me.

Jeffrey and Jaxson showing off their Rock star
personalities while waiting at an appointment

"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." ~Unknown