Last night, Brian had a Code Red meltdown in the middle of the middle school lobby. Lots of people saw it. They probably saw a Mom looking incredibly cool under a ton of pressure. A mom that stayed quiet and calm and who helped him work through it.
And after I got asked the inevitable, “How do you do it?”
Usually my response is, “How do I not?” or “You’d do the same if it was your son.”
But to be completely honest, jarringly honest, last night I wanted to say, “I don’t want to do it. I need a break.”
I want to have my own meltdown.
I want to kick my feet and cry. I want to swear and curse and say this life is not fair. It’s not fair to me, it’s not fair to Brian, it’s not fair to his brother, and it’s not fair to my husband.
I want the typical, normal life.
I want to not worry about childcare anymore. I want to be able to leave my 11 year old with my 13 year old for an hour or two after school. I want to leave them together so I can go grocery shopping alone. I want to be able to go out to dinner with my husband. Typical kids at this age can do that right? My 13 year old can certainly stay home alone and if my 11 year old was typical, I would leave him with him. But I can’t leave him and have my 13 year old feel responsible if my 11 year old gets to the point where he hurts himself or tries to hurt his brother. I don’t want to think about the realization that we will always need childcare, or I guess it will turn to “adult care” at some point.
I want to be able to go out of the house, maybe just to grab that gallon of milk we need, without the operation of going through all the steps to take my son out of the house. As his need to stay home, after we get home, continues to be stronger and stronger. I want to not always be thinking five steps ahead and have a plan and be on high alert for all the signs of a possible meltdown.
I want to just breathe. I don’t want to be on high alert all the time. I don’t want to plan around autism all the time. I want us to be a family. I want to just be a Mom, not a therapist. To be able to go out and have fun with my kids at museums, at the movie theater, or to a festival of some sorts without all the planning that goes into it. I want my older son to be able to stay at those things as long as he wants and not sometimes have to leave early because the younger just can’t handle the stimuli any longer.
I don’t want to think about every little new behavior and what it could mean and spend the hours researching what we could do differently or what we could add into his supplements to help. I don’t want to worry when things start to go south that we are heading into another regression- particularly a regression like last year that lasted months.
I don’t want to second-guess myself all the time and think about what I could be doing differently or what doctor I should take him to or just think that I’m not doing enough. I just want to feel at peace with all the amazing things we have done and the milestones we have met. I don’t want to think about milestones and developmental charts.
I want to have a mental health day where I can just stay home and cry. I don’t want to be at the point, where I need a whole day just to cry.
I want more time so I can put together new visual schedules and plans that I’ve had sitting in my back brain waiting to be executed. I don’t want to have to make new visual schedules and plans. I want any free time I have just to be enjoying my beautiful children.
I don’t want to be exhausted all the time. I don’t want my brain to constantly be going with doctor appointments, IEP meetings, insurance calls, behavior plans- it’s never-ending. I honestly feel like I’ve run out of room in my brain and I’m forgetting everything.
I want to spend more one-on-one time with my oldest while he still wants to spend time with me. He’s going to be thirteen TOMORROW and I’m no fool, I know that there will be a point where he’d much rather be with his friends than I. I don’t want to squander this time away.
I don’t want to feel so lonely and isolated.
I want my son to feel better within his body. I want him to talk. I don’t want to guess at what he needs and guess at how to make him feel better. I don’t want him to hurt. I want him to be understood. I don’t want him to have autism. I don’t, I don’t, I don’t.
From the outside, I’m rocking this mom of a special needs child gig. But sometimes, on the inside, I feel far from it.