For those of you readers who aren't aware of my boys' medical conditions; I have twin son's who have Traumatic Brain Injuries that are the result of being shaken by their father when they were infants. The oldest twin, Gage, was hospitalized for a month and a half and has severe brain damage. I was told that if he even survived his injuries he would likely be in a vegetative state for the rest of his life. Well he defied all the odds and has grown up to be an amazing young man whom, if you saw him on the street you would not know there was anything wrong with him. However he does have significant delays and has had a very rough road getting to this place in his life. And we still continue to deal with issues every day from behavior, to mood swings, to impulse control and the newest one is the realization that his 7 year old sister is quickly passing him in school and developmentally. Which I think is the hardest thing that we have had to go through, because it's something we can't fight unfortunately. His brother Connor's injuries were not as severe but they still cause him problems and developmental delays.
Having special needs children has always created new and oftentimes unusual sets of circumstances that many other parents can not always understand. I have had many instances where parents with 'normal' children can't quite understand why I couldn't bring my son to Chucky Cheese for their child's birthday party. Well because my son can not handle the over-stimulation of all the noise and lights. Not to mention that the giant rat and his little animatronic friends do not compute well in his brain as they appear to him to be possessed creatures who grew to 100 times normal size and have now started talking. In his mind that is just plain freaky (to be totally honest I think so too).
I have also had many people without children at all not understand why I allowed my son to throw a small fit over a toy or a balloon or whatever little nuance set him off. They never understood why I would condone that behavior. Never realizing that I wasn't condoning the behavior but instead I understood that my son was not able to process whatever was going on with him in that moment and therefore he was not going to be able to process anything that I said to him. Instead I needed him to calm down and THEN we would be able to discuss the behavior and how to better handle it in the future. They never understood that it was always a learning experience for him. That he wasn't throwing a fit because he was a spoiled child. Many people without special needs children have a hard time understanding the concept.
They don't understand what it is like when your child decides that he can only eat Kraft Mac & Cheese and nothing else for 3 months straight, nor do they understand why you would allow it. They don't understand that considering it takes you an hour to get any food into your child the last thing you want to do is spend another hour with him screaming bloody murder because it isn't Mac & Cheese. They don't understand why you would wash their favorite shirt every single night just so they could wear it again tomorrow. Not knowing that it is the one thing that comforts him (for whatever reason) and makes him feel safe while he's at school. So you do it. Every night.
Many parents do not have any idea of what it is like to have to spend an entire day in the hospital. Or a week. Or a month. They also don't realize how blessed they are to not have to experience it. It kinda sucks. A lot. Since their injuries we have spent an insane amount of time in hospitals and doctor's offices. From monthly MRI's and CT scans, to retinal specialists, to neurologists and neuropsychologists, not to mention physical therapists and occupational therapists... their lives have been an ongoing routine of appointments. They have slowed down a lot now that they are older and have started leveling out but in the beginning months the amount of time spent in waiting rooms and patient rooms was staggering.
Every year both of my boys have to come to the Children's Hospital in Aurora, CO for an evaluation in the neuropsychology department for a complete neuropsych evaluation. This consists of a multitude of tests that basically help the doctors see how the brain is functioning and in what areas there may be issues. This evaluation that takes the better part of the day to complete. And I don't mean that it takes the entire day because they are both being evaluated, I mean that EACH evaluation takes all day. If I am LUCKY I can get their evaluations scheduled on the same day, but that almost never happens. So once a year I spend two whole days in Children's Hospital while they evaluate my boys to see how their brains are functioning. In fact I am writing this blog post from the hospital right now! See...
After many years of sitting in the waiting room waiting on my kids to be finished, waiting on test results, waiting for our turn, waiting, waiting, waiting... I have come up with what I call my hospital waiting room survival kit. The following things are my go to items when I know that I will be in the hospital waiting room for an extended time.
- My Laptop - Most hospitals will have wi-fi for the visitors of the hospital to use while they are there. So when I know I am going to be sitting for awhile I am able to be online, work on my blog, work on projects for clients, or stream movies while I wait. It definitely helps pass the time especially if my 7 year old daughter has to come with us to the appointment. She can play games, watch movies and such which helps keep her from bouncing on the cushions and running up and down the waiting room out of boredom.
- A Good Book - I know it sounds a bit cliche' but it's definitely something that is helpful to have when you are going to be sitting in the waiting room for hours on end, or sitting in the hospital room. After a while the minutes start to drag on so having a book or your Kindle with you will help a lot. There was one time when my son had to have an all night EEG to check for seizure activity - he watched TV and napped all day while they were monitoring his brain waves - so I read to keep myself occupied. I think I finished one book and was able to get half way through another before we were done.
- A sweater or light jacket - for whatever reason I end up getting chilly while in hospitals. Not sure if they keep the temperature lower due to all the people moving around or what, but there have been many times when I wished I had a blanket or jacket because I was freezing. Of course during the winter this isn't a necessity but spring and summer I always make it a point to have one on hand.
- Snacks - I always try to bring some snacks from home when I know that I will be at the hospital for a while. I always end up getting hungry and sometimes the snacks at the hospital gift shop or cafeteria can be a little pricey. So remembering to bring a bag of pretzels or something is always helpful so I can snack without hurting my budget. Depending on whether your child is admitted or just there for testing sometimes they will provide you with lunch but not always so bringing snacks is always a good idea. Also it helps keep me from getting hangry which is never a good thing when I deal with doctors and nurses - I can get quite mean when I am not fed properly.
- My cell phone charger - so I always end up using my phone more while waiting because there isn't much else to do, so my battery drains pretty quickly. I always remember to bring my charger so just in case my sessions of Candy Crush take too much out of my phone I can always recharge. Hospitals almost always have plugs in the waiting rooms that patients can use for any medical equipment or such that needs plugged in, so you should be able to use those. Just make sure that you aren't keeping the plug from someone who needs it to plug in any of that medical equipment as that is far more important than your ability to crush candy.
Well it looks like my son is finished with his testing so I am all out of time. I hope that this was helpful to you and that if you ever find yourself needing to spend long periods of time in hospital waiting rooms you will remember a few of these items.