Monday, August 1, 2016

Raising children with special needs: One more step toward independence

For a while now, Max has been making sure that new foods he eats are allergen-free. “Uts?” he’ll ask (“Nuts?”), whether it’s a food at a restaurant or some exotic fruit. 

That’s been really satisfying. After years of care being a one-way street, it is heartening to see Max fending for himself. He still a ways to go; his fine-motor skills can get in the way of what he’d like to do, and we continue to figure out work-arounds. But there's been yet more progress recently. 

As Max was packing for a trip, he went to the cabinet where we keep his anti-seizure meds and matter-of-factly started pulling out packets of the powder (it's compounded). 

“You need a bag?” I asked. 

He nodded, and I handed him one. I felt downright giddy that Max understands how important his medicine is. He never did recall having a seizure last year, but gets that he needs meds to keep him healthy. That, we've talked about with him. But there he was, assuming responsibility of his own accord. That's the thing about independence, as with other milestones: You can teach it, you can encourage it, you can send prayers to the developmental gods, but ultimately it has to come from your child. 

Max proceeded to stuff the bag full of packets. A lot more than he needed but that could have been wishful thinking—as in, I hope we're going away for a month! (Not so much.)

It was a little moment but as with many things with Max, they’re never really little. It was yet another big step toward independence. 


  1. Yay Max! For us it's one step forward, two steps back. At least it seems that way sometimes. We can add, 'Can cook his own eggs,' to the the good list, but we can also add 'Took two doses of meds and mom had to call poison control to the 'needs more work list...'The on call nurses voice trailed off delicately when I explained the issue to her; "He's 17?" she asked. No way was I going there. Anyway, keep it up Max!

  2. Way to go Max! Independence is great but I'm guessing it's bittersweet in this case as it shows his awareness of his seizures.

  3. I'm a counselor for a week long camp for kids that need technical assistance with breathing - kids on venilators or that have tracheostomys or use CPAP etc. One of our kids in my cabin even though he is non verbal and needs a lot of help was able to set up all his own respiratory equipment AND direct the nurses etc on his feeding settings etc.

  4. Meds are important. I am glad he achieved this new level of self-awareness, but fear the hardships it opens him up to.


Thanks for sharing!

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