Tuesday, April 21, 2015

Time goes by so...so...slow...

Time goes by so fast. Enjoy it while it lasts!"

My heart hurts a little whenever I hear these words because I feel differently. As a parent, time moves so slowly to me. I must be the only person on the planet who feels this way, based on the number of times I have heard the above-mentioned platitude.

Why does time move so slowly? Because my 3-year-old son has developmental delays. 

Everyday I wait and worry.

I wait to see the next milestone. 

And I worry that he’s not there yet.

Ben's first hurdles were medical. He had surgeries and hospitalizations, countless doctors appointments, out-of-state consultations, medications, special formula. As these issues leveled out, we started observing more developmental concerns and had our state's early intervention program help us. Ben has come a long way with public and private therapy programs. He persists with sensory processing problems and speech and motor delays.

Ben's most pressing issue now is called "childhood apraxia of speech," or apraxia. 

It is like having a 1-year-old trapped in a (big) 3-year-old's body. 

He can't get his words out, despite knowing much of what is said to and around him. He has a neurological speech disorder. There is a disconnect in signals between the brain and the motor movements of the mouth. Ben is not stubborn or lazy or "just a boy" or "letting his sister talk for him," like many people like to advise me. This is not something just outgrown with time.

Apraxia is a conundrum. First of all, it is a diagnosis that a lot of speech therapists and doctors cannot easily diagnose because it does not have a universally accepted definition. Secondly, we don't know what causes apraxia. Finally, and most disappointingly, there is no standard, successful therapy for it.

If you aren't a speech therapist, you probably haven't heard of apraxia. I certainly hadn't, despite my medical training. It has been an interesting, grueling, maddening road at times. For the past 2 years, Ben has only gained a few new words each year. I think you can see why time has been extremely slow here. 

We made a difficult choice recently to start over with a new speech therapist and to increase therapy to 3 days per week. These sessions are often very hard for Ben and result in screaming and tears. He uses picture communication cards and a dedicated speech Ipad. We also have Ben enrolled in the school district's special education program, where he gets speech therapy as well as physical and occupational therapies. 

Living with apraxia is very difficult and a constant battle for me to keep pushing Ben beyond his comfort level in order to get progress. But not pushing TOO hard so as to create frustration and low self esteem. Life is obviously difficult for Ben, who just wants to communicate and play like every other kid. Having an apraxic brother is hard on big sis, who just wants to play with a normal kid. I am Ben's interpreter and the kids' referee. I am the 'mender of fences' and keep things as peaceful as possible. It is exhausting on a whole new level-even more so than residency call nights and ER night shifts! Probably because it is an unrelenting stress, with no days off.

I hope to be able to report more progress in the upcoming months...we are already starting to see some improving verbal skills as a result of our new therapist and ongoing commitment to his development. But I wanted to share about apraxia and spread the words about speech and language delays!

Big boy with his daddy


  1. The happiness in Ben's face is evidence of your success with him. Not only is his speech improving, he is leaarning to express love for those around him. Grandma's day is always made better when Ben smiles and hugs me!

    1. Thanks LK-Ben loves his grandma...and her ipad...and fruit...and sherbert :)

  2. I love your blog, Ann! Your honesty is extremely refreshing. More parents need to talk about these hurdles so that we can help, understand, and support each other. Bravo.

    1. Thanks J-I appreciate that. I feel the same about life's hurdles. Let's talk about it instead of pretending everything is ok!