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Last year my kid (then 2 years old) diagnosed with a rare genetic disease (He is our only child). The disease is progressive and result in kidney failure, hearing loss and eye abnormalities. This is really heart breaking but still me and my wife decided to be optimistic and instead plan for his future. We know it is so soon to be think about his career, but we want a head start in his case because we don't know what is coming in future.

He is an active child who learn very fast and very kind in nature. Also, he blends with other kids very well. He is going to pre-schols and have good amount of friends. Also he likes to dance :)

We really want to give him a platform from start (without putting any pressure on him) so that he identifies his path really early before the disease catch up.

some of my ideas are

Music - Piano, Guitar, Singing. Sturdies - To introduce him to science or mathematics. Sports - any sport, he rides a balance bike quite well, or gymnastics

Also, we want to save money for him so that he has a really good amount when he turns 20.

We don't know where and how to start... we can't find any internet articles on this. Any specific book i can read?

can you guys help with some ideas? or experiences?

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    I'm sorry for this heartbreaking situation. The toddler is only a toddler, though, and thinks as toddlers do. Let him do anything he loves. In my medical school class we had a blind student, and another was diagnosed with early macular degeneration, which meant he'd go blind very soon. A third was diagnosed with a heart defect that meant he'd need a heart/lungs transplant before the age of 30. All stayed in medicine. You can't predict the future, or what your child will love. Expose him to everything you can, but most of all, read to him every day. – anongoodnurse Mar 11 at 16:04
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My 15 year-old has severe cerebral palsy. It's not technically progressive, but we had no way of knowing early on how extensive it would turn out to be, and it affects her differently as she ages. I'm going to tell you what I wish I understood when she was 3. I don't think I was ready to hear it back then, but I'm going to tell you anyway.

Don't focus on maximizing his usefulness to others or his ability to do "normal" things. Focus on maximizing his happiness.

The risk of "identifying a path early" is that his identity might get wrapped up in a single path, making his happiness depend on doing something he may not be able to do anymore. That doesn't mean to avoid all activities he might be limited in later. That's no way to live either. It means keep his options as open as possible, so he can be happy whatever the outcome. Help him learn ways to overcome his limitations, but don't set him up for devastation if he can't. Plan financially, but don't let your future plans derail the present.

I don't know what sort of decisions you will face, but we've had to make decisions like whether to have a surgery that would make her much more comfortable, but might keep her from ever being able to walk. Those decisions are already very difficult. They would be even more difficult if it meant also destroying her sense of identity from the path she was on from a very young age.

So ask yourself, if he loses his energy for athletics, will he still have a way to be happy? If he loses his ability to hear, will he still have a way to be happy? If he loses his sight, will he still have a way to be happy? If he is never able to have a career, will he still have a way to be happy?

If I could go back 12 years I would tell myself to give up on my own plans for my daughter, and just enjoy watching her grow to be herself. Giving up on what I thought she would be doesn't mean I gave up on her. It means I finally accepted her.

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  • We want to give him everything we could and wanted to be as proactive as possible ..but you are very right that his happiness is utmost important.. appreciate your response. – Chetan Sharma Mar 12 at 7:38
  • This is good advice for all parents, especially those who are pursuing specific dreams / goals for their young children. – Michael Benjamin Mar 15 at 14:33
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I think you may be trying to put too much pressure on him. While I doubt he would feel it now, he would in a few years. You don't know what he will like. You don't know what he will be good at. The same applies to every young child. His condition does not change that.

However, since you mention that he may lose his hearing, I would definitely suggest learning sign language. Sign language is currently being encouraged for all young children nowadays, as it is a huge help in allowing communication before they can speak, and easing frustrations for both child and parents. Since your son may go deaf, or at least have difficulty hearing, it would be especially useful to learn, and is easier, and less frustrating to learn as a young child than as, say, a teen. This would also make the hearing loss less scary.

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Three is very young to have any guess as to direction, in my experience. At that age, they're really experiencing everything, and only after experiencing many things will they have any sense of what is actually "for" them. That typically happens at six or later, from what I've seen.

The most important thing, though, is to allow this to happen organically. You'll know when your child has found a direction that is for them when they are pushing you to do something. When it is "Daddy, when is the next class?", then they've found what they love.

My two took their own time getting to find their direction, but they're both finding it, and I can tell. I wanted my oldest to focus on gymnastics, for example, as he was very strong for his age and a great climber/flipper/etc.; but since it was me pushing him, he's largely uninterested, and goes because I tell him he must.

But my youngest asked for violin lessons, and - while not every practice is perfect - clearly wants to do it, and doesn't require nagging most of the time, but instead pushes for it. My oldest found programming, and will use recreational time to learn programming instead of play games.

I'm not sure if this is the direction they'll ultimately go in for their entire life; but what I am sure of is that they're improving themselves by doing things they love and will continue to strive at, as opposed to just waiting for the next moment they can play or watch TV.

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  • "That typically happens at six or later, from what I've seen." Can you explain this, or provide some kind of support for this? I only took a liking to Biology in High School, but I think you might mean something different. – anongoodnurse Mar 12 at 20:43
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    I mean in my personal experience, and High school certainly seems later than six. :) – Joe Mar 12 at 20:46

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