- Get them involved as often as you can as young as you can. - From their earliest ages, give your child choices. For example, I would ask my son, "Where would you like to infuse today?" He would make the choice of which arm the needle would go into. This empowered him to make decisions about his own treatment at an early age. If they are old enough to express preferences or ask questions, your child is old enough to be involved.
- Increase their personal responsibility incrementally. - Before my son was even in school, I had him cleaning and reconstituting his vials of clotting factor. It doesn't have to be huge, but each little step of responsibility we can give our children helps them step closer towards independence. Over time, he learned to chart his own treatments, let the doctors know about his own concerns, order his own pharmaceuticals and ancillary products, and eventually self-infuse. Because this can all be so completely overwhelming, I taught my son to handle all parts of managing his disorder in bite-sized pieces.
- Let them fail. - It is about as frightening as things can get for a parent, but we MUST let our children fail. For our family, that meant that I had to allow my son to suffer the natural consequences of failing to self-treat. Again, this could cost him his life. However, until he sees the absolute imperative of properly managing his own disorder, he will not be responsible or self-motivated. There have been times he got a joint bleed or other non-life-threatening bleed when he had forgotten to stay on his treatment schedule. Painful lessons leave an impact. Similarly, friends' children have discovered new ways to approach their challenges when they have had the opportunity to fail.
- Stand firm in not bailing them out. - There have been more than a few times my son has asked me to just take over for him where I have refused. I always assure him that I will be there in support for him during his learning phase of self-care. Yet, I tell him that I KNOW he can do this, and so he needs to get it done. If I don't do this now, I realize full well that I will create a terrible situation for him when he is on his own. Not only does he need to fail, he also needs to know how to correct himself or pick himself up when he has failed. This can only be learned if I don't bail him out.
- Stretch them beyond their ability. - Our kids can surprise us in exceeding our expectations. Whether our kids are cognitively limited or physically challenged, they can always surprise us with how much more they can achieve. My son's participation in a summer hemophilia camp three hours away from home has always helped him to reach higher. When he is an environment far from me, with the safety of trained medical staff, engaged in things he could never try at home, I am always amazed at how much more he has achieved. Sometimes, we parents just really need to get out of the way.
Like an athlete I punish my body, treating it roughly, training it to do what it should, not what it wants to. Otherwise, I fear that after enlisting others for the race, I myself might be declared unfit and ordered to stand aside. (TLB)