About a month ago, Luke was sick. Usually when he gets sick, it passes really quickly. But this time it lasted an entire week. He didn’t go to school for 4 days in a row. But he wasn’t really sick enough to lay on the couch the whole time either. He was sick enough that he couldn’t go to school, but well enough to drive me CRAZY at home.
It was a tough week.
Because it was so tough and I had a few breakdowns, I want to analyze it to see what I can learn.
First off, you need to understand why things are so hard when Luke is home. Luke is severely autistic. He doesn’t speak. He understands maybe 50% of what you say. We have been trying to teach him to use an iPad to communicate. He is getting there but not able to use it independently yet. He isn’t potty trained. His school has been working on it, but it is still a struggle at home. But the main reason he is so challenging when he is home for long periods of time is his inability to entertain himself. He doesn’t watch movies. He doesn’t play with legos. He doesn’t “play” with anything really. The only things he loves to do are jump on the trampoline and swim. Oh and he has a very limited diet. Everyday we help him try bites of new foods but he really only has 20 different foods that he eats regularly.
With all this in mind, try to imagine taking care of a sick child like that for 6 days straight. Yes, we would go to the park. Yes, we would go on drives just to get out of the house. But eventually, he gets so bored, he starts tearing apart my house. He loves to throw things behind the piano but this week he started throwing fragile items like glass lids and cups and bowls. So…I started yelling.
Usually I am able to keep my negative thoughts in check, but this week it was super hard. I started thinking things like:
“No one wants to help us. No one is here for you.”
“I can’t handle this.”
“When someone is sick, no ones want to help. All your help is gone because no one wants to risk their own health in order to help you.”
Now, thoughts are very important. If you plug in one of my thoughts into the Self Coaching Model by Brooke Castillo, then you will see what I am creating for myself. (Note: the Self Coaching Model is just a form of Cognitive Behavioral Therapy or CBT.)
Here is the Model:
Here is what my model looked like this week:
- C: Luke is home from school
- T: No one is here for you when you really need it.
- F: Depressed, Angry, Scared
- A: I push people away like my husband that might help me, I don’t call and ask for help because I don’t think I will get it, I stew about how I hate everyone who isn’t helping me, I curl up in a ball and want to disappear, I get mad at my family and yell.
- R: I don’t allow anyone to help me.
Yeah, it wasn’t pretty. I wasn’t creating some good results for myself. And my body would go into flight/fight mode whenever I got really scared about no one being there to help me.
Luckily, my husband was there to challenge these thought patterns. He told his boss about my challenges and his boss (a husband and wife team) brought me lunch. Then my husband took off the next 2 days from work to come and take care of us.
Wait…your husband took some sick days at work just to take care of you and the kids? Wow. That sounds like people really are there when you need them.
Yes. My husband was there. It was amazing…but it was interesting to see what was still happening inside my brain. My husband was helping and taking care of us, but my mind was still on alert mode. Any moment I thought: “He is here now, but he could decide to go back to work and leave you alone with the kids.” I was still a little scared. I think the thought that “No one is here for you when you really need it” had become a core belief with me after all that I have experienced before with my special needs son.
I want to believe that people will be there for me. But it is hard. And this week proved to me how engrained that not useful, negative thought is in my psyche.
After I started feeling a little better, I tried to think back on the situation. How else could I think about this? Ian (my husband) had been there for me when I needed it. And his boss had been there for me too. Who else could I have asked of help? How can I change the way I think about other people’s willingness to help?
By opening myself up to the idea that other people maybe did want to be there for me and that some people would be willing to help, I came up with a few more ideas of what I could do during a sick crisis.
- I could call the local Family Support Center crisis line. They usually don’t take kids for respite if they are sick, but they might take Luke for several hours if it is a crisis. (The only times I have a crisis with taking care of Luke is when he is sick anyway.)
- When taking care of a sick Luke, I need to take care of myself too. I can tell the kids to have nap time or quiet time in their room every few hours so that I can take a breather. (This essentially means locking Luke in his room with some toys for a half hour just so that I can keep myself sane.)
- Call husband for help BEFORE it gets too bad. He can take more time off than you think he can.
- Be humble and call your in-laws for help. (This is hard for me.)
- Tell your ministering sisters that you are sick. Maybe they can bring meals. (Ministering sisters are women assigned to me from church to make sure I’m doing okay.)
Essentially, my new model would look something like this:
- C: Luke is sick
- T: There are people who will help when I really need it.
- F: confident, peaceful
- A: Ask people for help. If they say “no”, keep asking other people. Show up for myself. Take breaks. Keep asking for help.
- R: I am there for myself and am open to receiving help.
We will see how this new intentional model goes next time we are sick again! Hopefully I can hold on to hope and confidence and not let my fears get the better of me!
If you have any thoughts or ideas for how to get through a week of sick special needs kids, let me know in the comments below!