Multiple Step Processes and a Developmentally Delayed Child

Have you ever stopped to think about how many little steps make up your simple everyday activities?  Back in middle school, I was given a writing activity asking me to describe the steps involved in tying my shoes.  It's amazing, when you break it down, how many processes are involved in that one ordinary task.  For kids like our youngest son, simple daily tasks take focus, attention to detail, and effort that you and I take for granted.

How often have you hollered to your children "Go upstairs. Get your teeth brushed and change into your pajamas."?  It seems like a very simple command.  You interpret it as "go get ready for bed".  I would give my oldest son directions like this on a daily basis.  It never occurred to me that something so simple could be so, well, not simple.  If you gave that same request to my youngest son, he would probably make it upstairs.  If you are lucky, he may even start the process of brushing his teeth.  Somewhere along the way, a "squirrel moment" is likely to occur.  On a nightly basis, it is more normal than not to find him playing with something in the bathroom, or cleaning the sink, or naked in the hallway reading a book (he may or may not have gotten to the teeth).  When you ask "what are you supposed to be doing?", his response is generally "What?"  He is genuinely baffled.  I lost him after "go upstairs".

Multiple step commands are definitely a challenge, especially if they involve an activity that is not routine oriented.  We have learned to make requests (commands do NOT work with children with oppositional tendencies).  Keep them simple.  Keep them specific.  Requests need to be related to the activity at hand.  Visual prompts are often helpful but can also be distracting.  For example, our son's team recommended keeping a checklist or a visual reminder of the steps needed to get ready for bed.  Unfortunately, when your child also has obsessive tendencies, such "tricks" or "gimmicks" tend to become a source of distraction and frustration.  Our son becomes fixated on the list.  He needs to edit the list.  Add new items to the list.  Update the list.  Give a verbal dissertation on why the list is not the best way to complete the activity.  It ends up taking longer than simply offering step by step reminders of what he is supposed to be doing.  It often becomes the fuel for an argument with a tired child and a worn out parent.

Activities such as tying shoes, getting dressed, riding a bike, getting a bath, picking up after yourself, and having a conversation can be overwhelming and often a serious challenge for children like my son.  Pick one of these activities and break down the steps in your head.  Now consciously complete them one step at a time.  That's what it's like for a person with expressive issues.  Stroke patients, children with Attention Deficit Disorder, children with developmental delays all have to take normal daily activities one step at a time with attention to each detail.  Those of you that have had a loved one experience a stroke and watched them try to relearn simple life processes can probably relate to what life is like with a child like ours.  They are frustrated with themselves for their lack of progress.  They are frustrated with you for trying to help them when they don't want to be helped.  It is exhausting for everyone involved.

Those of you who have been following our journey for awhile now, know that I have talked about my son's attempts to negotiate different challenges.  I've discussed his developmental pattern of burst of development and new skills, followed by lags in ability in which he seems to regress for a time both developmentally and behaviorally.  These lags often coincide with a physical growth spurt.  It's as if his body can't grow and develop neurologically at the same time.  This cyclical pattern of development seems to go in short bursts of just a few months.  I have joked and said that just when I'm about to throw in the towel and give up, the good Lord rewards me with one of his developmental bursts and we get to experience a couple months of "the good times".  Unfortunately, our son entered one of his lag stages soon after the New Year and is still enmeshed in that stage.  His disfluency is the most pronounced I have ever heard it.  The drooling that often accompanies the disfluency is in full evidence.  His distractability and impulsiveness is controlled by medicine but quite evident when it wears off.  Our son's tendency to fixate on phrases, activities, or ideas has been quite pronounced.  His obsessiveness and desire to control his environment has been stronger than usual as well.  It has been seven or eight months in this lag stage.  That is the longest lag we have ever experienced with him.

At our latest neurological appointment, his team recommended having him seen by a neurological speech expert.  They wanted to have her evaluate him and see if she could offer any recommendations.  We have been through lots of "specialists" and heard lots of "recommendations" so we didn't get too excited by this latest idea but kept an open mind.  The appointment went well.  We didn't learn anything new or too surprising but we did get some interesting insight and some affirmation that our efforts are not in vane.  She concluded that his communication skills are on the lowest end of average to slightly below average.  That is how our son has tested from the very beginning.  His disfluency is in the severe category at this time.  As a result, she recommends immediate and concentrated intervention be given to this issue.  His drooling is something that we need to raise his awareness of without embarrassing him or making him uncomfortable.  There is no proven method for improving this problem.  It is a result of hypotonia (low muscle tone), which is an issue for his fine motor and gross motor skills as well.  Her report will list recommendations for his current speech therapist to better focus on the stuttering.  She also recommends that we resume private speech therapy sessions from an outside entity.  (Yeah!)

Two things came out of her assessment that helped me as a mother.  The first was her reassurance that his speech issues/disfluency was a neurological issue.  There is nothing we did or didn't do to cause this lag that we are experiencing.  The second balm was her commentary on our son.  She stated that many children his age with speech issues like his start to develop an aversion to talking to others and communicating with others.  Our efforts to make him feel comfortable with himself and his ability to communicate must be paying off because he is more than happy talking to others and sharing his thoughts.  He is able to identify how his stuttering makes him feel frustrated but he doesn't seem to have any other negative issues related to how he feels about himself as a person. It's such a relief to hear that from someone else, especially someone who evaluates lots of children with similar and even more severe issues.

As time goes on, we are learning to trust our instincts with our son.  The decisions we have made have led us down some dead ends and wrong turns.  When we knew better, we did better.  Through every step, through every new specialist, through every new diagnosis, evaluation, and recommendation, we talked.  We discussed our options.  We talked about how it may impact  us as individuals and as a family.  Most importantly, we tried to keep an open dialogue of how we all feel.  I often worry that by writing this blog, I'm putting too much out there about my son.  As he grows older, I will probably still write them but not publish them.  Being a kid and a teenager is hard enough without Mom broadcasting all your issues.  What has kept me writing (and publishing) for now is the knowledge that when we started through this process,  I felt terribly alone.  No one else I knew had kids going through anything similar.  My hope is that others out there experiencing a similar journey have gained insight, learned to be an advocate for their child's needs, or just felt a little less alone.  I also hope that others out there who haven't experienced this journey gained a little more empathy for those that are and learned to judge less and love more.  God willing, we will all make it through okay.  It's a journey.  I'm going to love it while I'm living it.