Social Pragmatic Communication Disorder and Being A Squeaky Wheel Parent

Are you the type of mom who pushes and gets things done? Remember, the squeaky wheel gets the grease. 

These are the words spoken by a doctor — a neuropsychologist — who was telling me my daughter’s diagnoses of social pragmatic communication disorder. The words have played over and over in my head as I navigate a new world: The world of special needs.

I chuckled after she spoke those words, because if the past six years of parenting have taught me anything, it’s to push when your gut is telling you something is off.

It’s the reason I pushed when my little gal was initially denied speech services with Early On. It’s why I’ve been completely transparent with my struggles to parent her. It’s why I have pushed to get her the occupational therapy she so desperately needed but is too young to verbalize.

It has been nearly three years of thinking something wasn’t neurotypical with my daughter but I have no clue why.

So I pushed for an Autism evaluation, and my pediatrician graciously listened with complete trust of my instincts. We waited for four months to be seen by a neuropsychologist, filling out loads of paperwork and participating in several rounds of evaluations until we finally got our answer. 

In addition to Sensory Processing Disorder and anxiety, my daughter also has Social {Pragmatic} Communication Disorder, a diagnoses with many Autism-like traits, yet falls just outside the spectrum.

In case you aren’t familiar {I certainly wasn’t}, Social Communication Disorder is a new diagnostic category as of 2013 and applies to those who have deficits in the social use of language, but do not have the restricted interests or repetitive behavior found in autism spectrum disorders. There is no known cause. There is no “growing out of it” — it’s the ways these individuals are wired — period.

As an extrovert parent who has taken plenty of communications courses, it’s a tough pill to swallow, but it makes sense. She is creative, imaginative and social on her terms, but doesn’t really care to pursue friendships. She prefers older girls and her teachers over her same-age peers. She can tell you all about her Shopkins, but to tell a story or follow a conversation can be a major struggle for her — often, she will avoid it, or tell you “it’s boring.” She often misses the mark with sarcasm and humor. She is a challenge to discipline and a rollercoaster of emotion, though she holds it all together at school like a champ.

I’ve made excuses for her behavior, which comes across rude at times. I’ve had plenty of awkward experiences after she says something inappropriate {i.e. “I don’t like her” about other kids when they are right next to us}. I apologize for her a lot, and it’s getting more difficult as she ages. With the right therapies in place, I have no doubt we can get her to understand more about those invisible social cues so many of us understand but take for granted.

But she also has such a beautiful way of thinking. She questions things. She stands up for herself. She requests hugs when she needs them. She is very smart in many areas and has a huge heart — especially with her siblings.

The term ‘special needs’ feels awkward. It’s tough to know the social side of school may be a struggle and I need to be the squeaky wheel to ensure her needs are being met. I worry about bullies and puberty and mean girls and how she will navigate those tricky waters. Only time will tell.

The diagnoses has also been a major relief. We have a path. We have support from friends, family and teachers. We are not defined by a label, but it will allow her to get the extra help she deserves, the protection she needs at school, and the speech, occupational therapy and psychological help she may need throughout childhood.

As a mother, I’m supposed to be the lead teacher, but I have no doubt that I am the student and my daughter is going to open my mind to new perspectives I’ve never even considered. I look forward to our new path and learning more about what makes her special.

My heart goes out to all parents of invisible special needs children and the tireless love it requires, the constant questioning of your parenting, and the hours spent driving to appointments and on the phone with doctors. It’s honestly exhausting, and I know our situation is much easier than most.

I’ve quickly learned my tears won’t change the future, but my perception will. My mantra is more patience, less apologizing. More of being a squeaky wheel. Because if I don’t fight for my child, who will?

If you’d like to learn more about SCPD, this is a helpful article.