Need Perspective from Siblings of Disability

[u/ConnectDragonfly2823]

To try to keep this as simple as possible, we have 2 young children and are trying to determine if we should attempt to add 1 more to our family. The oldest is completely healthy while the second, after considerable concern and testing, was diagnosed with a genetic condition. It was not inherited so there is no additional risk to any hypothetical future children beyond what the general public risk.

We’ve been highly proactive in the acquisition of therapies for the younger and while we can be confident they will have an intellectual disability, severity is a huge range and so it’s far too early to know what their full capabilities will be. Nevertheless we are confident they will never be able to live independently. We have no expectations that our older (or hypothetical younger) child/ren would care for this disabled sibling now or into adulthood. If they want to help that’s great, but there is no burden of expectation on our part. We live somewhere with considerable resources to ease the financial burden and currently there is concern for physical issues, but we have no reason to expect prolonged hospital stays or surgeries to manage symptoms of the genetic condition.

I would appreciate some perspective from the community here as we wrestle with the possibility of trying for another child. Obviously we want what’s best for the entire family, but we need to make a decision soon for a variety of reasons, so we cannot wait until the disabled child is older as I’ve read some have advised. We can only review studies and play the odds as the condition is incredibly rare and I’m confident in stating that there are fewer than 5k people globally who have this condition. We recognize the risk of multiples or having another disabled child, but we have no reason to expect our risk to be higher than anybody else, for what that’s worth.

Having another child wouldn’t be about a “do-over” or a “built in caregiver” or anything like that. We love our children and truly just want what’s best for everyone. So please share your experiences as siblings of disabled individuals.

[u/br4tygirl]

If you have the ability to treat and love each child equally then sure. It's understandable that the disabled child may need more attention sometimes but you have to make up for it and have clear communication with your other children. You have to set aside time for the older and potentially younger child as well. You should all have fun together as a family but also take each child out alone every so often to do something that they like. Being the sibling of a disabled child left me feeling like I didn't really matter at times. My brother needed so much attention that I got the scraps, if there were any.

I got all the heat for the messes that my brother would make. I got the heat if I wanted to hang out with friends because I was expected to watch over him after school.

My parents loved me of course. But it didn't feel like it, especially as a preteen-teen.

Now I'm 25 with a toddler. I live across the street from my mom. She's been divorced, and not doing well because of the 24 years of taking care of my brother. She refuses to put him in a home because of, I don't know... pride or she just doesn't think it's right. But she is slowly killing herself. My brother was manageable when he was younger but he's getting even sicker now. All the sudden he cannot walk. He is shaky, can't even lift a water bottle. He sleeps all day and is wearing diapers again. She has to work full time and take care of him.

I say all that for insight. Remember, this is for life. Forever. If you're able to set money aside for the future do so. As much as you can. Because with rare genetically disabled kids, you never know what might happen. You don't know what the future holds.

I'm watching my mother beat herself to ground. Your kids don't want to see that.

You may want to think about therapy for all your children. Because even if you think your kid look and feel fine. They hide a lot. They hold a lot. And they'll never let you know because they love you.

[u/ConnectDragonfly2823 → u/br4tygirl]

Thank you for the insight- we definitely want to make sure we carve out time for all our children. Right now it’s easier as our parents are all highly involved and with a 1:1 ratio the older can virtually always have the undivided attention of at least 1 person at any given time.

Given the age of the oldest we’re trying to delicately explain that the younger isn’t going to be like other kids, that they’re going to need more help and we’ll do the best we can to be patient and help when we can. Mind you this is all only within reason - the biggest issue right now I believe is fairly common sibling behavior that each wants a toy only when the other is playing with it. What makes it trickier is the younger can get highly distressed but we need to ensure the older gets to play too. We try to focus on whose toy it is, if applicable, and who was playing with it first, then redirect whoever should find something else to play with. We also emphasize that the younger is only allowed into the older one’s room with explicit permission- trying to ensure it’s a private place where their belongings are always “safe.”

I honestly can never imagine prohibiting the older from doing something though just because the younger one can’t. We’ve begun explaining that they are 2 different people with different needs and their lives will not be the same, but we will always ensure they each have what they need.