Have you ever thought to yourself that you would give ANYTHING to cure your special needs child? Would you do anything to take their suffering away? Do you ever regret certain choices you have made or thought you have done something wrong to deserve a child who is sick?

In this episode, I talk about bargaining and grief. When you bargain, it’s your way of trying to gain control of the situation. It makes you irrational and miserable because it never leads to anything but pain.

What Is Bargaining? 

It is a way to gain control over something that you have no control over. When we talk about this stage of grief, it’s trying to make deals with God or the universe to make things right. 

I had a daughter that seemed to be perfectly healthy when she was born and typically developing, but when she was nine months old, she had a seizure and was diagnosed with a rare genetic disorder that causes her to have autism and epilepsy. 

When I found out, I spent so much of my time asking God to make her seizures stop. I told him I would become a better person, feed the homeless, go to church more, and the list goes on.  

Your bargaining might be with people or professionals. If you can just find the right doctor, you will do anything to cure your child. Or you will spend any amount of money to fix this. But the most dangerous thing to say as a special needs parent is that you will do anything to cure your child. 

How Bargaining Hurts Us 

We ask ourselves a lot of what-ifs. What if I had gotten help sooner? What if I had found the right doctor? If only I was smarter and figured this out sooner. That game can last forever and it never has an answer. We are so resistant to what is happening, we are trying to find a way out of it. When Remy got sick, I started rethinking whether I did anything wrong while I was pregnant, or if I took care of myself enough. Bargaining takes us really far, but we end up in the same place because there is no solution or answers that will satisfy us. It is just draining all of our energy. 

Why Bargaining Is a Waste Of Energy 

When I was twenty, my grandpa got lung cancer. It came out of the blue. When I went to visit him in the hospital, I didn’t realize it at the time, but it was the last week and a half he would be with us. I remember standing there with my grandma and I said, there HAS to be something we can do. I don’t care how much it costs or how much money we need to spend, we will spend everything to find the right doctor to cure him. I was in disbelief that this was happening to my grandpa and I would’ve done anything to make him better. 

But what I didn’t know then was that, when you are trying to bargain with something that you have no control over and scrambling for answers, you are wasting your energy. What you really should be asking is, What can we do now? How can we make the most of this? 

Why Doing ANYTHING To Fix Your Child Is Dangerous 

Remy is nonverbal. I say that loosely because she has words that she says and she does her best to communicate. But they aren’t enough to communicate what she really wants. Lately, she’s been having meltdowns when we open things that she asks us to. No one could figure out why she was having a meltdown when we opened something in front of her.

 I started bargaining with God to figure out why this was happening because no one I asked had any answers. I was prepared to put Remy on another medication because I wanted to do anything to help her stop feeling so upset all the time. But one day, I was able to figure out why she was reacting this way when we opened things for her. 

When you get to the bargaining stage of grief, where you are saying, I will do ANYTHING to give my child relief, to take this pain away, that is so so dangerous. I was saying, I will put my daughter on another medication so she can have relief. Had I done that, and given her another sedation pill, that would have been devastating. 

Trying to fix your child or find the answers, regardless of the price, could cost the love of your other kids, your marriage, your job, or your life savings, and there is no guarantee that if you give up everything that it will benefit your child. 

Wait Before You Decide 

Sit on it before you make any decisions that are hard to undo. If your child is having meltdowns and you don’t know why, don’t rush to give them more medication or hours of therapy. Spend more time trying to figure it out because your child is trying to tell you something. Our goal should be to figure out what they are trying to tell us because there is a language of autism and our job is to figure out that language and to help them learn ours. 

How What-Ifs Are Harmful 

I ask myself, what if I didn’t have Remy? Then she wouldn’t have to know any pain.  Or things like, if only I were smarter and figured this out faster, then she wouldn’t suffer and be in the hospital or have seizures. I spent a lot of time in that state, but I started to realize that when you spend all your energy thinking those thoughts, it’s not being spent on the things that have blessed our lives. Whatever you focus on is what shows up.

This doesn’t mean you stop trying to help them or work on the issues that are in their life, it just means you stop trying to make their disability go away at any cost. Maybe you don’t understand why they are suffering, I know those things are hard, but there was a reason why they were given to you and if you spend all your time trying to change what they are, you will miss the beauty of why they are in your life and the world. 

Important Takeaways

  1. If you focus on every way your life is miserable and doomed, that is what you are gonna see. But if you focus on the positive things then that is what’s going to show up.
  2. When you are trying to bargain, and search for the answer at any cost, you are wasting your energy. There are just some things that we will never be able to control or fully understand. So, what you really should be asking is, what can we do now? How can we make the most of this? 
  3. The most dangerous thing to say as a special needs parent is that you will do anything to cure your child. This mindset could cause you to sacrifice everything in the pursuit of trying to “fix” them, and there is no guarantee that any of it will work. 
  4. Take your time before you make any decision for your child that is hard to undo. If you don’t understand the behavior that your child has, don’t rush to give them more medication or more therapy programs. First spend more time trying to figure it out because your child is trying to tell you something.
  5. We ask ourselves so many what-ifs. But that game can last forever and you will never find the answers you are looking for. It is an endless cycle that will not help us to improve the situation. 

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