How did we get here? I have wondered this to myself and aloud so many times that I feel confident that sometimes the answers change but the short answer is this: when I look at how we got here I see a family full of people who have made such progress through such adversity that I feel proud. We have survived so many things that should have flattened us.
If you choose to be a part of this journey, you will be joining our team, and we have won so much and were on such a roll getting better that you would be joining a statistically successful team. This is not a sunk cost or a worthless venture. Life matters and we are worth saving.
I was never trained to live with disability. I never was taught that support is necessary and not shameful, because humans are social animals and we need each other and there can be no success without things to build it with and build it on. I was never taught that community is the only way we can survive. These lessons were ones I don’t think anyone takes seriously enough.
My family was living a life many of you have seen or lived yourselves, we were overwhelmed but meeting basic objectives. We took solace in that we weren’t losing but we were losing ourselves. We didn’t check in with each other enough. We didn’t know that admitting we were drowning was ok. We thought that if we just kept acting normal, things would work out.
In order to survive, I stopped doing things like getting my cancer treated, I stopped all medical treatment for myself except the treatment that keeps me from having panic attacks (propranolol) and keeps me able to walk (gabapentin and celebrex) because of my back and hips.
No one wants to admit that your small child’s disability is overwhelming and you feel like less of a mother every time you can’t help them feel better and help them meet milestones. You were successful with your older child. What happened? Why is this so much different? You don’t want to admit that in your isolation, you have become your own bully instead of your own cheering section. No one wants to be seen with all of the hate your inner voice is spewing. So I hid in shame.
Two autistic/adhd people will already struggle in relationships, and in relationships with each other the struggles are sometimes too much to handle.
How do you tell a world you have seen how they talk about people struggling and your biggest fear is being that person they judge?
My husband and I are both unemployed and need to fix that with jobs. We need help meeting a couple months’ bills while we get started working and fixing our lives.
This help used to be provided by a combination of public agencies and private people, who are now unable to help us anymore. Please don’t think that offering me advice that I need to seek out public assistance is help. I know you mean well, but the reason I am here is because that assistance is now unavailable. We can argue about why or why not, but I have been doing this longer than you and am very resourceful.
We need help. And any amount is help.
I am ready to face it now. I choose to think everyone who reads this is doing so because they are good people who want to help. I don’t care if you are watching this as some kind of entertainment, but if you are, at least pay me what you pay Max and we can call ourselves even. I have been there and been so miserable I need other’s misery too. Do what you have to do to survive.