As many of my readers and podcast subscribers know my twin boys were shaken by their father when they were infants. My son Gage’s injuries were so severe he was hospitalized for a month and a half at Children’s Hospital. His doctors told me that if he were to survive his injuries he would likely be in a vegetative state for the rest of his life. My son defied all odds and amazed all of his doctors with his recovery. It has taken years of work, physical therapy, occupational therapy, speech therapy; not to mention MRI’s, CAT scans and countless neurology appointments but at 15 my son has been able to attend school and is in his sophomore year of high school.
However, he also has many delays and various issues. Gage’s brain injury has caused delays in his executive function as well as his coping skills and anger management. His age is 15 but developmentally he is closer to 8 or 9 years old at times. Gage doesn’t always understand the consequences of his actions. He is quick to lose his temper and has low functioning coping skills.
This has made for a dynamic and often times explosive home environment. When you add to that a brother with his own delays from his brain injury. As well as a little sister who has started to pass him on many levels. We tend to have many different arguments and blow ups in our home. Having to deal with all these things I have learned a lot.
Here are the top 5 things I have learned from having a special needs child.
Patience – This has been the hardest thing to learn and even harder to maintain. As my son has grown the challenges have changed. Gage’s brain injury changed the way his brain processes information. It doesn’t function the way ‘normal’ people’s brains do. Gage left the hospital with low coping skills, sensory integration issues, and problems communicating. As a young child he would often have lots of outburst but because he couldn’t communicate it was a guessing game to figure out what the cause was. It took my family and I months to realize that the sound of paper tearing terrified him and would make him to scream. As he got older I couldn’t even take him down the Halloween costume isles at the stores because it was all too overwhelming for him.
As a teenager we are now dealing with hormones & teenage attitude which is a whole new circle of hell. There are days when he will have hour long rage-fests and I end my day physically and mentally wiped out. Only to turn around and do it again the next day. Every day I practice taking DEEP breaths and walking away until things calm down. Being a parent is hard enough, but having a special needs child requires levels of patience you didn’t even know you possessed.
Pick Your Battles – Gage’s brain injury often causes him to see things in only black or white. There is no grey. People who have traumatic brain injuries will often have emotional and behavioral problems. When he gets his mind set on something it is almost impossible to get him to change it. Which means if we make plans and then need to change them he is often upset. He doesn’t always understand why things just can’t be the way he wants them all the time. There are many times when I have to pick my battles with him. Is it really worth a 2-hour argument over whether or not he has cheese balls with dinner? Probably not. Do I want to get into an argument over whether or not he needs to shower today? Yeah, that’s an important one. There are many times when it’s easier for everyone in the family to allow certain things to slide than to engage him. Sometimes people don’t understand this or they criticize my parenting. They don’t understand that sometimes the peace that we get from giving in to those small things far outweighs the downside from them.
Some people are assholes. – Having a special needs child has made me realize that there are some people who are just assholes. I have had complete strangers come up to me in stores and tell me that I should control my child when he is having a fit. I have had people tell me that if I can’t control my kid I shouldn’t take him out in public. One person even tried to get in my son’s face and yell at him. This just made my son scream louder and I almost did physical harm to said stranger. People have no idea that my son is a special needs child because he doesn’t LOOK like he has special needs. I understand that my son’s meltdowns can be disturbing and often disruptive, but they don’t hurt anyone. Yes, I am aware that they can be annoying, just as a complete stranger telling you how to parent is annoying. Most people ignore him and continue about their business. But there are always those special few who feel it is their duty to put in their two cents on how I should handle my child.
Some people don’t know any better. – It took me some time to realize that those above mentioned assholes just didn’t know any better. They couldn’t possibly tell that my son had a brain injury that caused him to lash out when scared, angry or frustrated. They didn’t know that when he was a toddler screaming was his only form of communication. They didn’t know about his speech delay. And they didn’t know that just the seams of his socks in the wrong position caused extreme reactions. Not every child with a disability shows it on the outside, some disabilities can’t be seen.
Sometimes they are only noticeable when something is wrong. Not everyone is able to understand or deal with it when those issues come up. All they see is a child laying on the ground screaming. So I have learned to take everything with a grain of salt. Now when a situation comes up where I have to deal with someone who feels they need to ‘help’ me parent. I remind myself that some people just don’t know any better and I smile and walk away. (OK sometimes I still call them assholes in my mind, but not as much as I used to.)
It’s not personal. – Now that my son is a teenager I am dealing with puberty, hormones and all the attitude that comes with them. Add on the problems that come with a brain injury and my son is a powder keg most of the time. The smallest spark can set him off and he explodes. When he does have an episode there are times when I feel bad or responsible for the problem. As parents we often blame ourselves when our children have problems or issues. If only we had said ‘no’ more. If only we hadn’t given them processed foods. If only, if only, if only. I have to remind myself not to take it personally when my son has one of these episodes. The times when he says mean things because he is so frustrated, I can’t take it personally. Because I know that he is only lashing out because he doesn’t know how else to handle it. I wait for the storm to pass. Then, when he is calm enough to understand and process what I tell him, we go over the issue. We talk about what happened and how he can better handle it next time.
My son is one of the most amazing young men in the world. He has worked so hard to get where he is today and we as a family have struggled with him through all the ups and downs. We still have a long way to go and a lot more work to do. And while I try to teach him how to manage his disability – he teaches me too. And I am a better person and mother because of it.