The Choice

It’s been less than one month since Kearney was officially granted acceptance into a residential school for Autism and just a few weeks since her annual IEP meeting in which our options finally presented themselves as two viable choices (residential vs. home based programming as requested). Making this decision has been the hardest thing I have had to do as a mother ever, and this month has been a difficult one. While I should be feeling simply victorious, rewarded, and relieved to have FINALLY gotten somewhere in terms of getting her the help that she has desperately needed for so long; this whole process has led to an incredible emotional twister ride. Considering the options and the potential impact on Kearney’s life, our families’ lives, and my own personal life has launched me into a tailspin of anxiety, grief, guilt and fear mixed with the contrasting feelings of hope.

This decision was incredibly confusing and painful. Before the team meeting took place and home based service hours were finally increased, I was trying to prepare myself to accept that she would probably be better served if she moved away where the “professionals” could care for her on a 24/7 basis. This shift of thought caused an instant influx of intense pangs of grief and loss, as well as fear of guilt over the inevitable trauma it would put her through, the feelings of abandonment she would endure as she struggled to understand what was happening to her world. Despite the pain, I forged forward gathering as much information about what life at the school would be like for her. I talked at length to staff at the school, to a parent of a child who has lived there for 10 years, and also made a second trip back to observe life in the home that she would live in, were she to go there. What I learned from this all validated my original determined position which was that Kearney should not have to go to a place like that unless it was absolutely necessary. After visiting there, I didn’t see it as a place that I felt Kearney needed to be, and as I place that I imagined would bring her the happiness and love that she enjoys at home. Yes she would certainly learn there, but we haven’t adequately assessed how much she can learn with a professionally supervised ABA program in her homes after school, to allow Kearney to make gains in ADL independence, community activities, and assist us in managing behavioral problems effectively. An equally important decision making issue was that her father and I had been able to make a joint commitment to both become equally involved and dedicated to making this a priority in our lives (an absolute necessity for this to work considering our joint custody arrangement). Certainly choosing to keep fighting for an effective home program, the implementation of which leaves much of the work up to the parents, was not the “easy” choice of the two but for me it was easier than agreeing to let her go at this point in time, before we’d been given the chance to give her as much help at home as we reasonably could.

So there is a long and bumpy uphill road ahead (and I am tired already!) but will recharge again and channel my energy as we begin the ascent and commit to continuing to push on, fully expecting that there will be roadblocks and detours along the way, and with the knowledge that there are acceptable alternatives out there if the road becomes truly impassible at some point along the journey.