It’s not easy to explain how anxious I am tonight. I’m anxious because I haven’t yet received Gavin’s lab results from yesterday. This doesn’t necessarily mean anything good or bad, they just haven’t gotten them back yet.
As a special needs parent, it seems like there’s always something to worry about.
Special needs kids can be so complex and their respective conditions can make life extremely complicated. There’s always something to worry about because there’s literally so many things that can go wrong at any given time. I’ll be the first to admit that I’m guilty of waiting for the other shoe to drop but it’s not because I’m negative. It’s because there’s always another shoe to worry about.
I’ve spoken with countless special needs parents over the years and from all over the globe. It doesn’t matter where they live or how much money they make because one of the universal threads that tie us all together is our constant worry about our kids.
That’s something I feel is tough for people to truly grasp because while most parents worry about their kids, Special Needs parents worry about them for different reasons.
While one parent may be worrying about their child’s choice in friends, a special needs parent is often worrying because their child doesn’t have any friends or they’re being bullied.
We worry about things like wandering, medications, interactions with untrained police, life threatening health conditions, figuring out how to communicate, making sure they wear clothes, getting them to eat anything, possible acts of aggression, Meltdowns, self-injury, fucking IEP meetings, societies acceptance, and who will care for their child when we pass (because we won’t live forever). That last one is responsible for many sleepless nights.
Frankly, I don’t know how I even survive at times. I know some of you can relate to that.
There’s so much chronic sleep deprivation, anxiety, immeasurable amounts of stress, lack of self-care, fear, fighting and even financial nightmares, that it takes a serious toll on a person. If you even get sleep, you’ll wake up the next day and do the same thing all over again. Some of us will be doing this for the rest of our natural lives, and there’s a shit load of stress involved in just thinking about that.
With all of these things going on, all I was hoping for was to get Gavin’s lab results back. As terrible as it may sound, I don’t so much care what the results were. I just need to know what they are so I know what I’m dealing with.
It’s no wonder I’ve lost my hair, my beard is white and my nerves are fried.
Do you know what I call all of this shit I’m feeling right now? I call it a Tuesday.
Like we have a choice.
SO VERY TRUE. God Bless.
I agree with Sean that worry is part of parenthood, but to take it to the next step, it’s part of life. I am not a worrier by nature, but I do have things that cause me stress and concern. One special needs parent may be worried about finances while another is worried about school. One person might be worried about upcoming layoffs at their job while another is worried about an elderly parent. I get what you are saying and it makes perfect sense why you focus on the stress surrounding your particular situation, but it sometimes feels like you think that people who don’t have special needs kids are just living a wonderfully stress-free existence. You have this blog as an outlet for some of your stress and you want to inspire others, but you often forget to tell us the other half of the story, and that other half is the part that might help someone else who is in a similar situation to yours. Knowing you are not alone is great, but knowing how to work around or fix a situation is even better. Your gas was turned off and that sucks, but it seems like you figured out a way to get it turned back on. Tell us how you did it so someone else might be able to do the same thing. Your car was damaged. What was the outcome? What did the school say about Elliott being absent for a week? How did you convince Emmett to wear pants? These are the things that could help someone else not only feel better about their situation, but to maybe fix their own. Also, your weight loss journey… I follow your MFP app to see how you’re doing and as someone who is also trying to lose weight, I have been super interested in your progress. I hope you go back to logging food and weighing in soon, and I hope you’re still moving forward with your diet and exercise. It can be tough to stay motivated when the weather starts to get colder; I know it has been that way for me. I want to eat more pasta and fewer salads. 🙂
I think the worry is all part of parenthood, you just have extra worries with ASD diagnosed children. For example, I worry if my son will speak, will he be able to live a normal life, I don’t want him put in a home when we pass and so on. All we can do is live day by day and hope for the best really
Well said.