To J.N. – for walking an extra mile with our family
In an earlier post, I recounted how J.N. from Arizona Children’s Association offered during our first assessment meeting to visit Tony weekly to help generalize his cooperation with others. As the case manager who oversees the administration of benefits for Tony’s ABA programs, J.N. doesn’t have to meet with our family more than once a year.
From that moment on, she has demonstrated tremendous thoughtfulness and caring towards our son and family. When she found out about Tony’s mega love of baked Cheetos, she would bring in little bags of those for him each of the first few weeks to help him recognize that she had only the very best of intentions. When Whitney needed to move, J.N. came in and played with Tony for a bit so that I could get some cleaning done in our home. And she has repeatedly offered to come in and help out on other occasions so that I could take some time off for myself, though I can only confess to not taking advantage of that because the intensity of Tony’s therapy and Hannah’s homeschooling schedules, which lock up the areas in which timing for that could overlap.
J.N., thank you many times over for working patiently with our little man, and for all the countless ways you have been sensitive to his interests and needs. There can never be enough “thank you” notes for those times you have offered to help me out as well. The time you have so generously given has made a substantial impact, and we are profoundly grateful.
Some Doing to Consider
My loved ones and friends not yet met who have been reading along with us: awareness of what families such as ours could be going through is a great place to start, but often there is more that is required. The annual cost of therapies for kiddos like our son can bankrupt a family. Many children in the United States, again such as our son, depend on government disabilities funding and programs to help bridge the gap for the costs of these therapy services because private insurances often won’t cover them.
Something each of you may not be aware of is that these funding sources pay less than private insurance, and in some cases clinics that see larger numbers of government-funded differently-abled individuals must rely on donations to meet their overhead costs or they are unable to offer competitive living wages to therapists. When there aren’t enough therapists, there are either incredibly long wait lists or some individuals in need of services will simply go without. And, clinics can decide based on lack of sufficient funding to simply stop accepting clients with government disabilities benefits.
Here at the Quiet Crisis Next Door, although we have experienced some effects of this type of situation first hand, we are not writing this to specify where exactly donations should be made if you should be interested in doing so. I would, however, encourage that if you are considering possible charitable spending, look to your community around you for quality clinics in need of sponsorship that provide ABA, DIR, PRT, Habilitation, or music therapy services for individuals with developmental disabilities. I know that donating for research is common when it comes to conditions like Autism, but for families who are in the trenches now trying to help their children, access to services can mean a huge difference in how well their loved one is able to function over the course of a lifetime.
The successes Tony has had are a tapestry woven by many hands- there were times when some parts didn’t have skilled hands to guide the work. Please, if you are able, help support the hands that build up individuals with special needs and their families within your community.
Tony, building with all of his new pegs, photos by Ariana
