Thursday, September 1, 2016


Today is Part 1 in a 4 part series on Transitions to Adulthood 
No one hates his own body but lovingly cares for it, just as Christ cares for his body the Church, of which we are parts.
Ephesians 5:29-30, TLB

Is there anything that will tie a mother's stomach in knots like releasing her child with a chronic illness, special need, or disability into adulthood? We spend so much time trying to figure out the language, the treatments, and the rights involved in getting our children through everyday life when they are young. It becomes nerve-racking and even horrifying to think of our children suddenly having more responsibility for their own lives as they approach the age of majority.

I recall a friend who was having an awful time with stepping back as her daughter neared adulthood. Her daughter had multiple physical challenges as well as cognitive delays. Taking risks and being irresponsible made this mother absolutely distraught at the notion of giving her daughter more personal freedom. While her daughter's aspiration was set towards sharing an apartment with another friend who had disabilities, the mother was resolute that it was impossible. What if her daughter missed medication doses as she was prone to do? This was life-or-death business! She couldn't let go. As a result, friction, deceitfulness, and rebelliousness multiplied. It broke my heart for them and gave me a clear vision of what I DIDN'T want life to look like when my kids transitioned into adulthood.

I am at the crossroads now. My son (our middle child) is entering his junior year in high school. As we set our sights on college and living away from home, I need peace knowing that he will properly care for himself. Yet, this is a guy who often forgets to wear his medical alert bracelet and a bicycle helmet. There are often days he forgets to infuse himself or decides not to do it at all. This is life-or-death business!

As I walk this journey, I invite you to walk and learn along with me. 

Here is what I know thus far -- Training my son to be independent has been something we have been working on since nearly the day he was born. From the time my son was diagnosed with Hemophilia A - Severe at birth, I have put pieces in place to assure that he would be taken care of should anything happen to me. This meant that I made sure that my husband was just as capable of infusing our son as I was when he was young. It also meant that I began to prepare my son very early on for an independent life. That certainly has been no small task with the agitators of anxiety and PTSD putting additional pressure on our lives!

So, here is my TOP recommendation to all of us parents, no matter what our children's ability levels are:  From Day 1, your job is to train yourself out of a job. I know... If you are a regular reader of this blog, you know I have proclaimed this to all of my children from a very young age. While mothers like me who raise children with significant challenges can be very prone to micro-manage their care, our children MUST learn on some level to care for themselves. If not, we parents have only served as caregiving enablers. 

Here is what I believe self-care needs to look like over the years, to enable our children to achieve their maximum independence:
  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
While today's key Bible verse is taken from a passage on marriage, it seems apt in its description of self-care. We all need to value tending to our bodies. Our kids need to learn, no matter what their ability level, to care for themselves the best they can. Even making a personal opinion known can be a HUGE accomplishment in this area of transitioning to adulthood! 

This phase of child-rearing also brings to mind Paul's words in 1 Corinthians 9:27:
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)
To the best of their ability, each of our children needs to learn to be the boss of their own personhood and well-being. When we encourage them to do such, we are doing our very best job as parents. 

PRAY: Lord, it is SO hard to let go as a parent, especially when we are concerned about our children properly caring for themselves. Help me to train myself out of a job and teach my child personal responsibility as soon as possible.

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