Thursday, July 2, 2009

How Has Apraxia Affected Us?...How HASN'T It?!!

[By Lisa - essay for CASANA's Parent Scholarship application for 2009 National Conference on Childhood Apraxia of Speech]

There are 3 in our family: John (dad), Lisa (mom) and Patrick. Patrick is a wonderfully bright and comical 9 year old. He's cute, a bit chunky, and tries to be the class clown. Oh...he's also severely and globally apraxic.

How does Childhood Apraxia of Speech affect our lives? How doesn't it? Patrick's apraxia has reshaped our lives forever. We know no other life than "apraxia" and how it has consumed the three of us.

We have met people and have gone places that we never knew existed. We have heard stories of children and their illnesses that we never knew about, nor thought imaginable. Each and every waiting room that we've sat in held some new type of horror story that we were glad we didn't have. Every hospital overnight test brought about another tragic story of "the child in the room down the hall." That night we prayed for "the child in the room down the hall." We were hoping the light of dawn would greet that other child and that we wouldn't hear family members sobbing.

We have slowed our life and lifestyle from an east coast minute to a creeping, methodical mid-western crawl. We have stopped and smelled the flowers at every step along the way and even had to take pictures of them so we would remember what they were called later. We refer to our son as our "$100,000 kid" - this being the amount of money his therapies (and doctors) would cost us by the time he's hit the age that he is currently. I guess, like our nation's deficit, we'll have to revise that number upward now.

We often wonder if we've missed out on so many things that we should have seen our son do already or if we're still stuck in the midst of his "toddlerhood." He says he has a best friend in school ... poor Braden just wants to be a normal kid and run, jump, and play. Patrick just wants Braden to help him run, jump, and play. We've watched other kids grow and develop. We've also watched the look in our son's eyes. We sometimes see a shiny bright light in his eyes, but, at times, we also see a sad, non-responsive look when he just knows he cannot do it like everyone else can.

We've lost so many things. Patrick dreams of grandparents because we no longer see his. Most of them have passed away, but those remaining have disowned us. We'll never be able to explain to him that it's because he's not "perfect" to them. Our adopted Apraxia-KIDS Listserv is now our extended family. They are "our people." Our people that have worn our moccasins; some traveling even farther in them than we have.

We are so lucky. We only have apraxia. We only have sensory issues. Our son is alive and is gaining strength in his arms, legs, speech, and social skills. We aren't the other parents that we spoke to in all of those waiting rooms. We aren't the other parents that have horror illnesses or children with shortened life expectancies. We haven't had to deal with what they have endured.

The best part of our son's apraxia is learning how strong our own personal fortitude can be. We watch. We coach. We sing praises at every chance we can - to him and for him. The tears that we shed are sometimes overshadowed by smiles of joy when he's able to answer a stranger's question. We're proud that he's really trying to wipe his own butt because he really wants a puppy. We know he really just wants a friend and that puppy would be his friend. A friend that would play with him and understand every word.

Where would we be today if our son was "perfect"? We cannot even imagine. We really, truly cannot even imagine. How hasn't Patrick's apraxia affected and changed his life and our lives? After all, what would we have possibly done with that $100,000 anyway?!


  1. Beautifully real. Another story of another family, remarkably similiar to our own... so why are we all so ilsolated?

  2. There seem to be very few, even on the listserve, who have "severe global apraxia" to deal with, and you have articulated what it means on so many levels! Even down to the butt wiping:) So many little things others take for granted. My son just turned 8 and I hear him in every aspect of your story. And I hear myself as well, being grateful that I only have what I have given all that I have seen as a result of this journey into the land of special needs. It saddens me to hear that even family, who certainly don't "get it" in our case, have abandoned you. I hope you continue to find your family among those of us who do "get it".

  3. Your story is also the story of my son who is now 4. Everything in his life is such a challenge. He too has that vacant look in his eyes when he knows he just can't do what the others are doing. Every day is both a gift and a struggle. He is a sweet boy but I see him slipping into a depressed state as other children around him grow more able and he only makes very subtle progress. I have NEVER heard anything from another parent of a severely globally apraxic child. It feels so uplifting to know my son is not the only one. THANK YOU!