Teen Son On Disability?

[angel2write]

A friend pricked me into thinking about this earlier this week.

What is my son going to do for the rest of his life?

He's been having back problems since before Christmas. After X-rays, MRI's, a visit to a surgeon, and a second opinion from the best pediatric neurological surgery center in the state, he's been diagnosed with a degenerative disc disease. (It doesn't seem to have a more scientific name than that.)

They say it is congenital. That he'll have it all his life. That the best we can do is try to strengthen his back muscles to protect his spine and try to draw out the time between surgeries as best we can.

We're praying for a better outcome than this and pursuing treatments. That's not my question. My question is, supposing the worst case is right, God doesn't heal him, no miracle takes place... what does he do for the rest of his life?

The kid is fifteen. He's smart. Very, very smart. He's also dyslexic and dysgraphic. He has trouble spelling, writing, and using his hands. He uses a dictation program to do his school work and he has a brilliant memory, so he gets by. He's always been bookish, awkward, and clumsy. But now, he's barely able to walk, sit, or stand. He can't carry anything. He is in pain off and on all day.

What can he DO with his life? What sort of job can he get? Can he marry? Can he go to college? How will he walk to classes? Carry books? Manage laundry? If he stays home and does online college, what career field could he possibly study? Where do I find resources to learn about disabilities at college? He's homeschooled, which is a blessing as he can continue his education even though he would not be physically able to attend classes right now, but it means I don't have the resources of the school system to back me up.

I could really use some advice and pointers. I feel like I don't even know where to start researching this. I feel like I'm responsible for his future, and I don't know what to do, and it's bringing on panic and despair.

 

[Toria]

Hi Angel - I have no practical advice, but you could look for role models for him. Prof Stephen Hawking for example. I couldn't tell you what he suffers from, but he is in a wheelchair, cannot speak and is one of the most brilliant minds in the world.

Please don't dispair - there is someone for everyone in this world and he has plenty of time to find his Someone.

What are his interests? That could point to a career path x

 

[intothelight]

Angel,

No one can tell what the future holds for your son, and even with physical and learning disabilities, it will be whatever he finds himself passionate about and throws himself into. In the mean time, it is up to you, bear and the doctors to find the best course of treatment for him and make sure that he gets it.

Right now focus on getting through this episode and the follow the doctors advice on having him strengthen his back muscles and core, as the stronger they are; the better they will protect his spine. I don't know if there are support groups, but these can be immensely helpful and inspiring. Also, keep in mind that medicine makes huge advances every day, and what is not possible today, can be in a few years.

It is tough as a parent not to have the "what if's" or "what should be's" run away with us and it is even worse with PTSD. Prepare yourself to feel the loss of what you perceived your son's future to be in light of this change. That is normal, and your son will also experience that loss.

Keep praying and keep hoping.

(((Hugs)))

Deb

 

[angel2write]

Hi Angel - I have no practical advice, but you could look for role models for him. Prof Stephen Hawking for example.

Thank you for this, Toria. My son wants to be a scientist and is very depressed, thinking he can't now. I will point this out to him & have him research Professor Hawking's life.

Really appreciate it!