Can I get some help around here?!
News flash: You are not going to be able to do this on your own.
We all have the vision of the supermom, the woman who goes through life sacrificing everything for her special needs child, never relying on anyone for anything, bravely facing each day with determination and grit.
Yeah, fuck that. You are going to be crying in your sweatpants at noon, because you missed the appointment with neurology you waited six months for and the gtube bag spilled on the mattress and it stinks and the nurse didn’t show up. Again.
Aren’t people always saying, “Let me know if I can help with anything!”? You tell yourself they don’t mean it, and if they did you wouldn’t let them in here anyway because they’d take one look at the mess and call CPS or something. But, maybe they do. Maybe they could bring you a meal? Maybe they could come with you on the next drive down the tollway so your fifteen year old with autism can see the dumpster with the eagle painted on the side of it and get sauce packets from the taco bell to add to his collection? Because an adult to talk to would be really, really nice for a change.
Maybe that nice lady from church could have her teenage son come mow your lawn so your husband could spend some time with your typical kid? Maybe your friend could come and sit with your sleeping kid while you do yoga in the next room. Or sleep.
God, what if you slept?
Maybe you could make a list of this stuff and just put it out there. To the people you want in your house. Be careful. The last thing you need is more drama and your crazy neighbor chain smoking in your living room and crying about her dead cat.
The point is people want to help. They may have no idea what to do for you, no clue how to position your kid in her wheelchair or be terrified your son might have a seizure while they are there but they can do simple shit to free you up or give you ten minutes of peace. Ten minutes can be pretty meaningful to a caregiver’s stressed out brain.
When my guy was in a body cast my friends got really good at just coming over and hanging out so the isolation and Caillou episodes didn’t rot my brain. When my husband got cancer on top of everything else, their husbands came over and fixed stuff. If you don’t have friends like that, ask your doctor’s office or the social worker at your kid’s school about support groups or do a little searching online, because honey you are going to need support. Isolation is rugged for moms of typical babies and toddlers, so that goes double for those of us who deal with kids with...stuff. I have distinct memories of trying to start an IV on one kid with an naked autistic toddler doing his Linda Blair thing and a baby in a sling. And thinking to myself, “Other people just get their kids, dressed. And fed. Then they are done. I hate those people. A lot.”
Yes, we are rock stars. But rock stars have an entourage. So get yourself an entourage. At the very least your backstage rider should include some coffee, some inappropriate humor and someone to tell you how badass you are. It just isn’t too much to ask.