This is the number one question we hear from family members and friends. It doesn’t always come out explicitly and sometimes it’s not even clear. I can see it in their eyes. They want to help and they have no idea how. They feel powerless and it doesn’t feel good. It’s uncomfortable, confusing, and frustrating.
It makes it even more difficult that we don’t always have an answer. Feeding our son isn’t as straightforward as it is for most kids. If someone does watch our son for us we need to be back before it’s time for him to eat. Some aren’t comfortable watching him at all because they don’t understand what it means to have a feeding tube or how to handle an emergency.
I’m going to suggest a few things family members and friends might be able to do. They may not be something they WANT to do. That’s OK! I hope to include something for everyone. The most important thing is for parents to come up with an answer to this question for each person that wants to make a contribution.
- Folding laundry – This one isn’t for everyone but if it’s something the person is willing to do it will absolutely help. If you’re like us we always have clean laundry but it’s difficult to get a full load of laundry folded every single day. There’s usually a backlog of at least a load, sometimes two or three, of clean clothes sitting in and/or on top of the washer and dryer.
You’re probably thinking, “well… that doesn’t involve spending time with us!” Give your child a try at helping. My son loves to help fold laundry.
- Reading / Teaching – Again, this one’s not for everyone. If you have a friend or family member that loves to read, color, or do puzzles then they might enjoy sharing this activity with your child. Anything that keeps your child occupied and content is a plus. Some things you just can’t do without a second pair of hands to help wrangle your kid.
- Customize your babysitting – No, you can’t leave your child overnight at your parents’ without worry. That’s just not in the cards. Thirty minutes of peace and quiet to read a book would be nice, though, wouldn’t it? You don’t have to leave the house. You can leave the house and go somewhere a block away. You might go further if you’re comfortable leaving your child with someone for an hour or two.
What will you do with this time? Go to a coffee / tea shop. Sit down with your laptop and cruise Facebook or Tweet without grubby fingers attempting to steal your phone the moment you get too absorbed. Go out to lunch and ask for “take out,” then sit down somewhere comfortable with your food. If you get an emergency call you close the container and your food is already packed and ready to go. Your bill is paid. You can leave at a moment’s notice.
Some freedom is better than no freedom. I love to take my son with me but sometimes it’s nice to be away from him for a little while. I’ve talked to plenty of Moms who could really use 30 minutes to take a bath or read a book without interruption. Everyone needs to re-charge their batteries.
I’ve had an incident where someone was offended by this. It turned into one of those, “don’t you trust me?” arguments. I don’t think this is a normal response BUT maybe be prepared with a kind response if it does come up. I don’t exactly remember how I responded. There might have been eye rolls and sighs of exasperation. It wasn’t helpful.
- Spend time together – It’s tough sometimes to explain how isolating it can be to have a kid that needs extra care and attention. It’s truly helpful just to have someone come visit, sit, and talk. Good luck explaining how awesome this really is to someone who wants to be helpful. Most people that want to help us don’t feel like they’re helping when they come visit and spend time with me and our son.
It IS helpful. It’s a huge relief to be able to talk to another adult who isn’t a health care provider for our son. I don’t mind sharing updates about our son’s progress but I also want to talk about something besides him. Theoretically, I could go visit someone and still do that. Unfortunately, our son vomits frequently enough I’m constantly on edge when we’re at someone else’s home. No matter how many times someone tells me they don’t mind that my son might vomit on their floor I can’t help but be on guard every second, watching for signs he needs to be moved off the carpet.
It’s also difficult to haul my son’s feeding supplies to someone else’s home so taking my son somewhere else drastically limits the visit time. I can comfortably stay about 2 hours at someone else’s house without bringing all of his supplies. Anything longer than that requires as much planning as your typical person would need for an overnight vacation. It’s a ton less work if someone comes to visit us.
- Stop trying so hard – Sometimes the most helpful thing someone can do is to stop trying to be so helpful. If someone wants to help they need to be welcoming to the idea you might need to tell them how they can. If they insist upon helping in their own way it’s actually most helpful that they don’t help at all. I don’t understand the mindset of people who are insistent upon helping in the way THEY believe will be most helpful so I can’t explain it.
Unfortunately, it’s a huge nuisance when your child’s medical complications are too confusing to explain in a way that lets someone else make the correct decision about what you need most. If they won’t let you tell them what they can do to help and refuse to stop providing “help” you might need to avoid them. Hopefully, it doesn’t come to that and they can understand that they don’t know as much as they think they do.
I hope this is helpful. If you have any other ideas for friends and family members to help parents of special needs and/or medically complex children please don’t hesitate to leave them in the comments below! Thanks for reading.