To call or not to call

I have a friend who has a daughter with CP and ID and a son with Autism. He is divorced and does not see his kids very often because they live half way across the country. He was separated from his kids when they were 8 or 9 years old.  He has a couple other kids without disabilities as well.

He has planned week or two visits to his kids twice a year since the divorce.  The kids are all grown now, in their 20's and he has stayed connected to all the kids all this time through phone calls, texts etc., but it has been harder to stay connected with the 2 with disabilities because he has to depend on his ex to make that connection work. He sometimes feels that the kids are not super interested in his calls because his ex is always involved. He does not really get to have a conversation with them but rather it is like having a conversation with the ex as she relays what she thinks he wants to hear.  When he sees the kids they seem happy to see him but they are also anxious for him to leave so they can get back to their routines. He wonders if his kids would be better off if he just stopped calling and visiting. 

This was difficult to hear and to consider.  I could not imagine not texting regularly with my son and talking on the phone once a week but my situation is so different from his.  My son is in control of himself and his decisions.  He does not need to have a go-between to communicate with me. I know my conversations with my son are genuine and truly with him.  My friend, on the other hand, does not.  He does not really know if his kids are truly happy to hear from him.  He cannot be sure if they would miss his calls or not. He says he feels guilty for not calling more often but also guilty for calling and disrupting their routine. I cannot imagine what that must be like.  To want to do what is best for your children but not really having a real honest way of knowing what that may be. 

I can understand his desire to stop calling them but at the same time I cannot.  He has never thought about not calling or texting his kids without disabilities so why is it even a consideration to not call or text those with disabilities? I think it really comes down to the level of independence and control his kids have over their life decisions.  I know that his daughter (we will call her Grace) has very little control over her life. Decisions are made for her and even when she is given choices they are very limited.  She has the ability to make choices from a wider array but is not often given the opportunity to do so.  There is some degree of learned helplessness and codependence between her and her mother, her primary care giver.  Grace's mother has never offered to set up the phone for her and leave her alone for the call. Grace can communicate verbally so she CAN interact on a call. She has also never initiated a call between Grace and her dad. At one point she even asked my friend if he would consider giving up custody of Grace so her mom's new husband could file for custody. This did not happen by the way. 

This situation reinforces for me the importance of individuals with disabilities being taught early on how to advocate for themselves, how to be self determined and how to make supported decisions.  When children with disabilities are not given choices or any degree of control of their own lives, they can easily become passive and allow others to make all their decisions for them and often to do everything for them--or actually do everything to them. This is learned helplessness.  The more someone else makes their decisions and does things for them, the less self determined and independent they become, allowing others to have all the control. This becomes the way things are, the norm, the expectation. 

This also takes away quality of life and ownership of life from the individual with a disability.  I think of the expression, "you don't know what you don't know." If you never know how to make your own decisions or care for yourself to any extent, you will never know the joy of it. if you never know the joy of it, you cannot miss it. If all you ever know is being passive and allowing others to do and choose for you, you cannot know how empowering it is to make your choices, to choose your own pathway, to accomplish something independently, or to know your own potential outcomes. You cannot know what it is like to make a bad choice and thus, the fulfillment of setting it right, and learning from that mistake. 

I really do not think most caregivers are out to reduce the quality of life of their charges (though certainly some may). It can be quite overwhelming and exhausting to care for someone with disabilities. It is even more of a challenge when the caregiver is attempting to afford the individual with a disability the chance to accomplish tasks on their own.  They may need support and instruction and prompting. This takes time and energy. It is not uncommon to think it would just be easier and quicker to do things for them rather than taking the time and energy to support them to complete the tasks on their own thus aiding them in being more self determined in the future. It is critical to begin teaching individuals with disabilities how to make choices, how to advocate, how to complete daily living tasks, how to ask for and refuse things. We can never really know for sure what the best options are for individuals with disabilities unless we help them to be able to have a voice for themselves. If Grace had been taught this early on, maybe my friend would have a better handle on her wants and needs and he could have more easily and less painfully made a decision about whether to call or not to call.