There are time in life when you can’t get around a hospital stay for yourself. Unfortunately if you are the primary caregiver for your child with autism then this poses a problem. After a recent hospital stay for myself, we learned a few things that helped Logan cope with this change in his routine. No one wants to think about being in the hospital but it’s imperative to have a plan in place for the inevitable . Preplanning now will save you and your child so much frustration.
The day after Christmas started like any other. We got up and ate breakfast then got ready to go to Epcot to see the Candlelight Processional. It’s been on my bucket list of things to see at Walt Disney World and Madison’s friend was performing in the choir at that evening’s show. Seemed like a perfect idea to spend the afternoon working on getting pictures for the blog for next year’s Christmas Around the World series then take in the show.
As we stood in line, I suddenly felt flaming hot (as in temperature wise not looks) and nauseous. I excused myself to go to the bathroom before I tossed my cookies in front of the two women in line in front of us who had just had fish and chips from the UK pavilion. I got between 30 – 50 feet before I completely passed out and hit the pavement. In the meantime, my family had been seated in the Theater of the Americas, an outdoor pavilion, so they never noticed that I went to the ground. If you’re gonna pass out then Walt Disney World is the place to do it. I was attended to quickly by Cast Members as well as a family care practitioner who just happened to be walking by. My family was brought to me then to our car to join me at the hospital. Lucky me, I got to ride in the ambulance.
By the time I saw Logan in the back of the emergency room, he was clearly distressed. Michael had wisely let him bring in his 3DS to play while he tried to figure out where I was as well as what was going on. He had received wireless headphones for his birthday which were conveniently in the car so he had them as well. His look of complete relief when he gazed into my eyes in the ER was unrivaled. He rocked back and forth in his chair as the doctors attended to me. He needed to go home. The smells and lights coupled with the concern for what was happening were stressing his sensory system. When it became obvious that I was staying , Michael left long enough to take both children home before returning to the hospital for the night to be with me.
Looking back on the stay, there were a few things that we did to make the 3 day hospital stay manageable for Logan. I must admit that Michael did most of these things on his own. Yes, Logan was not the person ill in the hospital but the point here is to have a plan in place in advance before something like this happens. It will make it one less thing to stress over for everyone. Michael did ask for suggestions on a few things but for the most part, he took care of it.
1. Recognize that everyone is stressed by the medical event but the person with autism has sensory issues that can not be ignored in the situation.
Imagine being worried about your mom as well as trying to navigate the lights, smells and sounds of the emergency room or hospital. This point was cemented in my brain after I came out of the MRI tube. My sensory system was so overloaded by the confined space, the increased temperature and the overwhelming sound that I could barely hold myself together. Back in my hospital room, I was a crying, shaking, overheated mess. It took me several hours to compose myself enough to relax and get some rest. Imagine going through that every day. You must attend to the child’s sensory needs. Have him put on headphones or sunglasses. Call someone to come get him immediately BEFORE he gets overloaded. Remember that what is a minor nuisance to you is a major event for him.
2. Have the child call or Facetime the parent in the hospital instead of visiting.
You don’t want to keep the child in the dark but you have to recognize his limitations. I was able to speak to Logan on the phone , text him and Facetime him to show that I was alright . He never had to leave the sanctity of his room but got the satisfaction of knowing and seeing that I was ok as well. By recognizing his needs and not forcing him to come to the hospital to get overstimulated, he was able to navigate the change in routine and caregiver much better.
3. Keep to his routine in his familiar surroundings as much as possible.
I am so blessed to have amazing adult nieces in my life who love and care for Logan as much as I do. Without a moment’s hesitation, they came over to our house to stay with him for my hospital stay. This allowed him to stay in his routine of walking the dog and checking the chickens. Routine is important to these children especially in times of stress. Arrange with someone in advance that you can call to get the child from the hospital then stay with him at his house. Familiar surroundings will make all the difference in the world.
4. Keep the mood light .
While I am not saying if the parent is dying or seriously ill that you should lie to the child or make it seem less serious than it is but you can keep the child’s fears of the unknown at ease. Explain simply what is going on with the procedures. Put it in terms he will understand. When it became apparent that a blood transfusion was in my future, we talked Logan through it by texting him that I was going through my vampire transformation. Him and I had a 10 minute conversation by text about sleeping with a cross on his chest and how he could be Van Logan (like Van Helsing) since he already had the cool fedora. It kept his mind at ease that I while I was seriously ill, the doctors were on top of things. Sometimes being silly is the best medicine.
5. Let him retreat into his own world for a time.
There was nothing wrong with letting Logan pace in his room for hours or play excessively on his xBox during this stressful time. We all have our own ways of dealing with the world around us during times of turmoil. His way is no better or worse than Madison’s way. It’s just different. That’s ok too. We need to make the child feel safe enough to assimilate and process the information that he is given in his own way. There is no right or wrong here.
In the end, you hope that you will never need an emergency plan in place. That doesn’t mean you shouldn’t have one. I sincerely hope you never have to use it. But it will be so much easier for everyone if it’s in place. It will make their lives run that much smoother as well as relieve the stress and worry from you as you attempt to get well. Everyone benefits from a good emergency plan. You will be thankful that you have it should you ever need to use it.