This is a very real and candid post. Contentment is something that I have really been struggling with lately. As I was growing up I had a vision of what my family and life would look like. I figured I’d get married and have two kids (with no problems). No where on my radar was infertility or Autism or special needs.
I know that God does not make mistakes and that this is the life that He planned for me. I know that life is not supposed to be easy or perfect. But life has been hard. So very, very hard lately. Some of the things we are dealing with with Caleb are normal teenage things, but when you add the complexity of his Autism, the difficulty is just magnified exponentially! We have to explain ourselves over and over again as to why he cannot do something (like cleaning his ears with q-tips himself) or like today, while on our vacation, why we can’t go mini-golfing in the middle of a thunder and lightening storm. We told him that I would take him tomorrow, but his short term memory is so short, that he doesn’t remember, so when we ran out to the story to get a couple things I forgot to pack and dinner, he thought the weather was dry enough so that we could go. Never mind the fact that the course would be soaked because of the amount of rain that we had received. Those are things we just cannot explain to him to understand.
I have to admit that I get jealous when I see friends able to go on vacation alone because they have family that watch their kids. I would just like to be able to have a date night with my husband without the kids, which is almost impossible! Thankfully, we do have that opportunity throughout the summer due to the kids summer program. Without that, it would be almost impossible for us to find time to reconnect, just the two of us.
It seems like we are always in some sort of battle. We’re either battling behaviors or medical conditions. Caleb’s neutrophils have dropped once again. We had his labs drawn a month ago and then again two weeks ago. His neutorophils were back down to 700. They should be at lease 1,200. We’ve been told 500 is where he’d be admitted to the hospital. He’s also had two ear infections in the last month (with ear tubes!). We just can’t get rid of it. It looks like we’ll be seeing the ENT when we get home!
I always desired to be involved in the kids’ schools, but when all your school interactions resolves around IEP and other special education issues, you get worn out and you don’t feel like doing much else. When it comes to party time, about all I can handle is signing up for plates, napkins, or silverwear. Yes, I am that mom! Whatever I can do that is easiest is my motto!
All I have ever wanted and all I have ever prayed for is a nice vacation. A vacation that doesn’t involve fighting, frustration, meltdowns – a vacation where we didn’t have to worry about Autism rearing it’s ugly head. We don’t overwhelm our days to hopefully help keep that at bay. But it seems the harder we try, the more frustrating it is. We didn’t even leave the house and Steven was upset yesterday because he was looking for something and we didn’t understand what he was looking for, which caused problems with his attitude when we stopped for lunch. Today, with Caleb, it all revolved around the mini-golf.
I’ve tried not trying so hard, but that doesn’t work either. It’s just more of the same. I know this is our life. But sometimes, I want a “normal” life!!!!! A life where we can do things where we don’t have to do things and worry about whether the kids are going to be in sensory overload or if it’s going to be too much for them or if it’s going to send them into meltdown mode. I don’t want to worry about Autism! Is that really too much to ask for?!?!?!?!? I am a bad person for thinking this way?!?!?!?!?!?
I feel horrible for thinking like this. I love my boys. I truly do. They are both the sweetest things. Life can just be hard. So very, very hard. And I’m tired. So very, very tired!
I would ask that you pray for me.
You are not alone. I have been feeling the same way lately. My daughter is medically fragile, developmentally delayed, and cognitively impaired. I also care for my partially disabled husband. This is not the vision I had for my life when I was in college. I am praying for strength, endurance, and guidance for the both of us. God bless you.
Thank you so much for sharing. People need to understand what it’s like inside of others’ lives. I know better how to pray for you! And I can relate in the tiniest of ways as my son is a mixture of ODD & OCD & strong will & genius IQ. It is relentless. I hope you have supports from other parents of autistic kids in your area!!