On how we keep this ship from sinking.
I don’t consider myself an organization or homemaking expert by any means. However, Wil and I each have quite a bit on our plates. In addition, one of our kids has significant special needs. We get asked pretty frequently about how we make our lives “work” with relatively few upsets.
Here’s a few things we do to manage our special needs household a little more easily.
Childproof everything from the get-go: Let’s get real here; you are going to need to shower occasionally. You can’t do that and keep your eye on an 8 year old who likes to elope. Don’t let pious instamommies convince you that childproofing your house will make them spoiled or whatever. Turn your house into Fort Knox ASAP, so you can have some piece of mind. Kids with special needs don’t always have the awareness or self control required for staying safe, keeping rooms tidy or keeping valuables un-broken. Save yourself a headache, and just lock everything down that moves.
Childproofing tools can be pricey, we’ve used DIY options we found on Pinterest (like pool noodles on doors to avoid smashed fingers). If you have a child with a recognized disability, you can sometimes get your health insurance or local advocacy group to pay for things like door alarms and safety harnesses. It never hurts to ask!
Create a system for paperwork and stick to it: Between medical referrals, educational plans and various community resources, you are going to accumulate a lot of paperwork. All important stuff that you don’t want to lose. I used to keep a binder for all of Rin’s paperwork, but even the 6 inch binders became too small. She graduated to a filing cabinet this summer, and we have a folder for each doctor, therapist, caseworker, program, government benefit etc.
My husband and I can easily find things we need when the other parent isn’t home to help us, and now even respite care providers and grandparents can find important information in an emergency.
We still keep a small traveling folder for emergencies that includes medical and social history, as well as insurance and contact information. Everything else goes in the cabinet.
Pre-make anything and everything you can: On Monday mornings for instance, I assemble about 7 sandwiches and stick them in our fridge to eat throughout the week. It’s a simple thing that saves me a lot of frustration. Rin has been off and on special diets since she was born, and has an unpredictable appetite due to her medications. When you combine those factors with the 6-12 appointments she has every week, even little things like lunch can get stressful. We also put entire outfits together on hangers when we fold laundry, so that we don’t need to search for matching clothes. All of her hygiene products (toothpaste, lotion etc) are in one basket for easier bedtime/bathtime prep.For every step of your daily routine, just think to yourself; “what preparations could I make in the future that would save me time and energy the next time we do this?” You might be surprised with what you come up with.
Host social functions rather than attend them: We used to avoid hosting people at our home because we thought the disruption would be too much work for our family. But we’ve oddly found the opposite to be true! Packing up a wheelchair, walker, extra clothes, special meals etc are all way harder for us to handle than just having someone to our place. We already have everything we need here, if a friend is willing to come to us then we are happy to host ourselves. It’s much less stressful to be the host when you’ve got a kid with special needs.
Find a simple way to store and administer medications: Katherine has a lot of them, and several are highly-scheduled narcotics. It’s important that they are given correctly. We keep a MAR (medication administration record) on our fridge so that we can keep everything straight. We also keep all of her medicine and syringes in buckets we bought from Dollar Tree. When it is med time, we just grab the buckets rather than rummaging through a cabinet or fridge door.
Do domestics simply: We no longer buy colored towels, sheets, socks or dishware. It’s all white, period. That way everything always matches (even when you buy a replacement years later), and everything can be bleached.
I only buy two cleaning products for the whole house; vinegar for glass, and Mrs. Meyers concentrate for everything else. I don’t have the time or the money for a thousand products.
Get delivery whenever you can: I’m not talking about pizza. We recently added pharmacy delivery to our long list of monthly deliveries. We have also had things like toilet paper, toothpaste and vitamins automatically delivered via Amazon Prime every month. A local grocery store will do FREE delivery if your bill is over 100 dollars (not hard to do when your kid is on a special diet). Rin uses special diapers, and her insurance company put us in touch with a company that delivers them once a month automatically (if your kid is in diapers past the age of four for a medical reason, insurance will usually buy them. Ask.) Bills are on autopay whenever possible. If delivery or autopay is available and not expensive, I use it.
Get a paper planner or phone app you like, and make it your Bible:
Something I learned from my executive pastor as an intern; don’t agree upon dates or schedule ANYTHING unless you have that planner available to reference and mark down in. This is true for anyone, but especially a parent with special needs kids. We have hundreds of things to juggle in our brain. I also use the GTD system (also known as Getting Things Done by David Allen) to keep organized and productive. It’s been incredibly helpful. Develop a system that works for you, and keep your datebook updated.
Accept help when it is offered: If somebody asks if I need help, I suck down my pride and take it. Last year my whole family became horribly sick, and trying to care for Katherine’s needs when the adults in the house are also puking was nearly impossible. One friend dropped off dinner for us, another one took our filthy, germ-infested dirty clothes to her house to wash and fold for us (no doubt, a brave friend!)
I think sometimes special needs parents get a little too attached to the superparent labels others slap on them, and try to take on the world alone. That doesn’t do us any favors. If someone wants to help you with housework, appointments, childcare (within reason) or meals; let them.
Give yourself some grace: Even if my kid were perfectly healthy, my house is never going to be spotless 100% of the time. I’m going to forget appointments every so often, and my kid will sometimes get McDonald’s at the last second. This is doubly-true when your child has health problems. It truly is okay. You aren’t serving your child well by beating yourself up. You have a lot on your plate, and the only one keeping score is you.
There you have it.
That’s how the Cox family hasn’t self-destructed (yet).