Starting To Wonder

As a first time Mom, I took my 18-month-old son into the doctor’s office and said;  “why isn’t he starting to say words like the other kids in his play group?”  The doctor replied;  “Oh I wouldn’t worried about it he will talk when he is good & ready.”

Getting Concerned

At the next visit, I asked again.  “I think that there may be something wrong – he is not saying a lot of words.”   The doctor calmed my fears.   “Well, I wouldn’t be too concerned just yet – there is a wide range of what is considered “typical” language development at this age – let’s just take a wait & see approach…”

Worried

A few months later, I was sitting in the waiting room practicing my speech in my head.  When I got into the examining room I blurted out;  “I’m  really getting concerned – he still isn’t talking very well and he is also throwing tantrums ALL THE TIME!  I have also been noticing these odd “staring” spells…  The doctor stroked his beard and chuckled;  “Welcome to the terrible twos my dear – is he your only one? [insert patronizing voice]. Yes, yes they do like to get their own way don’t they?”

Scared

After a few more months of fear, I strode into the doctor’s office and with a shaky voice declared;  “I insist that you refer me to a developmental pediatrician – there is something wrong with my son and we need to find out what it is….”

The Diagnosis

What followed was a lightning round of appointments, tests, reports and then the final diagnosis:

“I am sorry to have to tell you that your son has a global developmental delay. Our tests show that he is behind in the areas language development, fine & gross motor skills and cognitive development.  His speech disorder is causing him much frustration as he struggles to express himself – this explains the tantrums…  The “staring” spells that you have been witnessing are actually atypical complex partial seizures.  We would like to start him on medication immediately.”

“We suggest you begin with early intervention measures right way.  We need to begin addressing his deficits now – the sooner we intervene the better his outcomes will be…”

“I knew.”  I was a first time Mom who didn’t know anything but “I knew.”

Advocacy 101

This was my first lesson in a long, (and ongoing), set of lessons at the Hands-On School of Advocacy.

You know your child better than anyone.  Yes, you will have to rely on doctors, clinicians, teachers, social workers and therapists but YOU are the expert.  You are the only person on the “team” that truly knows and loves your child & will continue to be there today, tomorrow and forever.

“I knew” and you will too.  Trust your gut.  You will see things, feel things, and know things. Listen to the experts and then follow your instincts.

This concludes our first lesson in Advocacy 101.

Good luck with your next assignment & I sure hope to see you around campus!

Until next time,

Colleen