It's OK

As with all posts, identifying data has been changed to insure for confidentiality of clients.

A number of years ago I organized a support group for parents of kids who had autism and other disabilities.  One of the women who spoke was a friend, more an acquaintance, whose daughter has autism and a number of other very serious challenges.  At the time she spoke, her daughter was well into adulthood.  She had always been described as "low functioning,"  having minimal spoken language,  minimal self care skills and cognitive level of a preschooler.  The challenges she and her husband faced raising and caring for their daughter are many, pervasive and really, really hard.

She related issue after issue that confronted them and their daughter.  She needed to be bathed, sometimes by mom, sometimes by dad depending on their schedules and professional obligations. She noted the awkwardness that her husband had to deal with bathing their adult daughter.  She discussed the inconvenience she and her husband had meeting their social and professional obligations, having to split their time between which of them would go to the event and which of them would stay home with their daughter.  She went on to describe in some detail the many mundane yet demanding details required of them in their care of their daughter.  And after each challenge she described she said a simple statement.  She said, softly, convincingly, "It's OK."  That was it.  Calm. Believable.  The acceptance she had with challenges most all of us can't even imagine and it moved me to wonder about the challenges in my life that made me crazy and how well I accept them.

Her story came back to me when I was recently meeting with a single mom me re: her only child, a son who was dealing with some sensory issues.  Sensory issues, for those who don't know, have to do with the five senses we all learned about in Elementary school - sight, sound, touch, smell and taste. It's common for people with autism to have either a strong aversion to sensory input in one of these five areas, or to have a need for hyper input in one of these five areas.  Think of fingernails on the chalkboard and how that sound makes the skin crawl for most of us, or a foul smell that leaves us fearing we will retch.  Think also of how inviting something silken or soft is to touch and cuddle with or of a song or CD that you want to listen to over and over again.  These are examples of wanting less or more sensory input.

So the mom in my office was discussing  the sensory issues her son was having and how to strategize to best address the issue.  Now for most of us, teeth brushing is a matter that requires a small amount of  planning, and while many kids don't want to brush their teeth, it's usually not a heavy lift to get them .  For this mom it was taking a whole lot of bandwidth, because her son hates - HATES to brush his teeth.  It was unclear how much had to do with the flavor of the toothpaste, the sensation of the toothbrush in his mouth or maybe something else, but he would not brush his teeth.  Mom had tried incentive programs,  consequences, different flavors of toothpaste, different toothbrushes both electric and traditional, discussions, education from the dentist who indeed was concerned about the child's dentition and some small cavities that had been seen and would soon need to be filled - a whole 'nuther challenge she feared to face, and more, all with poor results.  And I thought about my friend with a daughter who was almost completely reliant upon her parents.

So I shared her story with the mom, not to diminish her experience or minimize the challenges she had with her son, but to try to give to her what my friend had given to me and the others in the room when she spoke a few years ago.  I got to the core of her presentation and said "It's OK."  I wanted to reassure her.  She is indeed facing a real challenge - teeth do need to be brushed and mom was working hard, using all the tools she could think of.  She's doing a fine job and, as is so common with raising kids with special needs, is enduring very significant emotional costs in doing so.  "It's OK" I said, wanting her to really take in that she is indeed doing all they could.  Somehow, someway, as her son developed, the issue of  dental care would find some kind of resolution, maybe as a result of mom's interventions or maybe not. It will resolve somehow, even if not fully to mom (or her son's) satisfaction, even if other challenges arose to make the dental care look like a walk in the park.  I wanted her to take a moment to just know that.  It's OK.  It's a lesson I believe we all could benefit from taking in a bit more deeply despite the depth of the challenge we have in the midst of our struggles.  It's OK.