Raising a Disabled Child is All About Communication
In terms of your personal life, it’s time to double down on loving your partner. This the time you need to increase your shared communication and trust.
My wife and I just welcomed a baby girl into the world! I’m super stoked and I want to be an involved dad, but in the first month she’s been home I haven’t changed any diapers. The problem is I just don’t know how to clean her parts. I grew up with two brothers, you know? I don’t want to do something wrong and scar both of us for life.
Culver City, California
I hate to tell you this Jackson, but it’s inevitable that you will do something to scar your daughter for life. You’re a dad. She will eventually be a teenager. It’s bound to happen. However, it ain’t gonna happen by taking care of her poopy diaper. So, take a deep breath and listen up.
There are likely two reasons you’re freaking about cleaning your daughter’s genitalia: technique and psychology.
Let’s start with technique.
For wet diapers, there’s not much that’s particularly unique to cleaning a girl. Clean her vulva and bottom gently with a wet wipe and then rediaper. Easy peasy. There is a special consideration, however for a poopy diaper. You will always want to wipe away from her vulva with the wipe. That means front to back and from in to out. You will not often have to make a fuss by really getting between her labial folds or anything. There’s no need to get crazy. Firm wipes will suffice.
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If you’re getting uncomfortable while reading this, you’re probably being affected by the second reason you could freak out: psychology. The problem is that you are bringing adult ideas about female genitals to the changing table. They don’t belong there. For much of your life that context has been sexual and this is something completely different. You should consider your daughter’s vulva as you might consider any anatomical feature you will need to wash — it’s just another body part that needs to get clean. This may take some practice and some self-talk, but you’ll get there.
Speaking of talk, one good way to get out of your head is to talk to your daughter while you’re changing her. Tell her what you’re doing. Start normalizing this stuff. And follow my lead here by using the proper name for the parts of her genitals. Explain you’re taking off her diaper, and throwing it away. Talk to her about cleaning her bottom and her vulva and putting on a clean diaper. She may not understand what you’re saying but she’ll get a lot out of hearing your voice. It will become very important later in her life because it lays a foundational understanding that her genitalia isn’t something dirty that she has to be ashamed of, but it’s just another part of her, like her fingers and toes.
I know you can do this, Jackson. It will be an important step for both you and your daughter, and I promise changing diapers won’t scar either of you. Save that for when you walk in on her making out with someone. Then you can talk about scarring.
My wife is 7 months pregnant and after a series of prenatal tests, we’ve found out that we’ll be having a boy with Down Syndrome. This will be our first kid. And before we started testing we agreed that we were going to love them no matter what, but we just wanted to be prepared. Now that we know, though, we have no idea how to be prepared. What should we be doing?
Bismarck, North Dakota
You and your wife should get used to being called heroes. You’ll hear that a lot and it will always feel weirdly derogatory. I’m not going to call you a hero. You’re a parent who is going to love his kid like any other parent. That said, there are some things you need to consider that most other parents don’t.
If you haven’t already spoken to a counselor at your birth center or hospital, you should do so. They should have people on staff to help parents preparing to welcome kids with special needs. If you can’t track them down, talk to your future pediatrician. They should be able to get you connected with the early intervention system in your community.
Early intervention services are essentially there to help your kid keep up with their peers. They can provide support for your baby’s physical, social and cognitive development until the age of three. They can also provide family counseling to keep you centered and focused. You’re entitled to these service by law thanks to the Individuals with Disabilities Education Act. You’ll want to connect with early intervention services as soon as you can, learn what will be available to you and make plans for the requisite appointments and evaluations.
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You’ll also want to take particular care in financial planning. The best way to go about this is to build a legal team that specializes in the needs of individuals affected by developmental disabilities. You’ll need to consider issues like social security income and developing a special needs trust, and securing guardianship after your child turns 18 (if needed). You can do the paperwork on your own, but it will take a great deal of research, time and energy. If you’re short on any of those, find a professional.
In terms of your personal life, it’s time to double down on loving your partner. This the time you need to increase your shared communication and trust. As parents, you’ll be on the hook for a lot more decisions about your child’s care than those with neurotypical kids. You’ll need to be able to talk stuff out rationally and calmly, both knowing you have your child’s best interests at heart. If any of that makes you nervous, you may want to consider talking about it with a pro.
If you haven’t already, find a local community of parents with children affected by disabilities. It’s always good to have people to talk to who understand your journey as a parent. This can be a lifesaver. Your local children’s hospital will likely be able to show you the way.
That’s a lot to think about. But please also take some time for some self-care, too. Your kid is going to need a healthy, energetic dad. So eat right, get some meditation time in and take some walks. And don’t forget to spend time with your partner. You guys are embarking on an adventure. It’s called parenthood. And the only thing that will make it different for you is that you can access more help. Enjoy the ride.
My wife and I are about to have a baby, but we already have a four-legged baby we call Butch. He’s a good dog, but we’ve never seen him around little kids. What should we be doing to prepare him for his little bros arrival?
Here’s what I’d like you to do, Beau: Bring Butch into the room and read this response out loud. We need to chat.
Hi, Butch! Who’s a good dog? Is it you? Oh, it’s you! You’re a good dog. Now, listen, Butch. Your humans are going to bring home another, smaller human. Don’t be confused or alarmed. It’s a baby. It’s basically just like the humans that feed you treats and take you out for walkies, it’s just smaller and cannot feed you or take you out for walkies.
Here’s what you can expect in the next couple of weeks, Butch. Your humans are going to call up friends with kids and ask them to bring their small kids over to see how you react. They’re going to keep a super close eye on you and the kids. They are going to let you smell the kids and listen to the kids. For the first couple visits, they’ll keep the kids in their arm until they’re sure you’re cool and then they may let you get closer.
They might also start carrying around a fake baby. This is a doll. It will not smell like a baby, but your humans will talk to it and change its diaper around you, just like it was a real baby. You will practice being chill while this is happening.
Your humans may also start doing strange things like tugging on your ears or tail. They’ll be gentle but persistent. They’ll be doing this because babies like to grab stuff and you need to get used to it.
You may also start to hear strange wailing noises. These are recordings of babies that your humans will be playing to get you used to baby sounds. They might do this by playing YouTube video of babies or downloading baby sounds from the internet. Again, don’t be alarmed, but do get used to it.
Before the baby comes home, your humans might decide you need some obedience training. That’s not because you’re a bad dog. You’re a very good dog. Oh, yes you are. Oh, yes you are. It’s just that we all need a little self-improvement sometimes, you know? Just to make sure we’re the best version of our dog-selves.
Finally, before the baby comes home, your human will bring a cloth home from the hospital and put it in your bed. It will smell weird — kind of human-y but different. This is what the baby will smell like. So hang out with it for awhile.
When you do meet the baby, finally, your humans are going to take their time. It’s going to be a measured process and they will never ever leave you alone with the baby. This isn’t because they don’t trust you. It’s just because they want to keep their baby safe at all costs.
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Okay, Butch. Good boy! Now make sure Beau gives you a treat and be sure to protect that new baby brother of yours. They’ll be able to take you on walkies in about 42 of “your” years. Be patient.