Getting "Control" of My Child's Speech Apraxia Through Educating Myself

[By Natalee Landers, an essay as part of CASANA's Parent Scholarship Program for the 2009 National Conference on Childhood Apraxia of Speech]

I am the mother of three wonderful children. My step- daughter, Ashley is 13 years old and my son, Zachary is five. We also have a three year old daughter named Madison who was diagnosed with Apraxia last year. Her three years have been full of smiles but also many struggles. Within the last 18 months, our beautiful daughter Madison has started to exhibit signs of a neurological problem, to a recent diagnosis of Apraxia. Our family is determined to do everything we can to help her. Unfortunately or fortunately, our views of family and our child have also significantly changed.

We had dreams of Madison breezing through her childhood, finishing high school, graduating college and walking down that aisle. Yes, these are the grand dreams all parents have, certainly without thinking about the day-to-day problems that may enter that “pretty” picture. Needless to say, when Madison did not start to babble like her siblings, I thought, “Um...well, she did have a traumatic birth and has been coddled more than her brother since I have gotten to stay home with her.." so I put the thoughts off. Then when she started to have trouble walking and not saying mama when her peers did, I realized that something was not “right.” I realized we needed to see a doctor, and this started the endless worrying, crying at all times of the day and hoping beyond hope that I was that over-protective mother that her pediatrician called me.

We started seeing various doctors and continued to hold out hope that they would find “something” that would tell us what was wrong with Maddie. Over the last 18 months she has had three MRIs, various cat scans, an x-ray/swallow test, early intervention testing (with no results the first time around), a 30% hearing loss (not bulging ear drums as another doctor reported) and six seizures. Finally, the doctors have said, “There is a problem neurologically (delayed myelin) and we do not know what has caused it but with good services she should be just fine. We do not want to label her just yet, she is too young.” Needless to say the turmoil of not knowing and the waiting has been the toughest on our family. Some days are harder than others. I try to stay positive but often times it is too much to process without getting overwhelmed.

After riding the roller coaster of emotions and searching aimlessly for answers I ran across a website that dealt with Dysarthia and Apraxia. Reading the text, I knew I had uncovered what our baby girl might have. The doctors agree it could be Apraxia, but they don’t want to “label’ her too early. We have been told that she does have a speech disorder instead of a delay as we were told originally. The doctors said that Maddie should be getting intensive speech therapy. My husband and I walked out of that appointment happy and relieved that we finally had something concrete on which to grasp but at a loss for what should we do next. So we put our son, Zachary a bundle of energy, into a three hour a day enrichment child development program so I can devote my time and energy to therapy for Madison. I struggle with the fact that the majority of my day is spent “in therapy” with Madison. Am I taking too much time away from other children? My son is only five and still needs me and if Madison where healthy than Zachary would still be at home with me?” In the same vein, I think he is healthy and developing normally, so he will be just fine....right?

Currently, we see Madison as a child with so much spunk and personality. She is bright and curious about the world around her. She loves everyone and her two big dogs. What tears at my heart on a daily basis is she is trying sooooo hard to communicate. She still grunts and points things that she sees or wants. I no longer keep track of the words or phrases she has used or is currently saying. She is so exuberant when she sees our neighbors that she falls to the ground laughing or runs from them, instead of saying a simple “hi.” She loves to play with her peers if only she could say, “Hi, play with me.” Instead she pushes, shoves or pulls them. Seeing her trying to form words and not being able to do it destroys me and her dad, but we keep going. Zachary has even started to talk for Maddie. I notice when she is trying hard to say something in the car and I can’t see her face or look in the direction of what she is pointing at Zachary will inform me of what she is pointing at or talking about. Her frustration level in just this past month has reached an all time height. She has started to pull her hair out. That was horrendous and frustrating. I just want to make it all better. I have gotten her to clap her hands instead and tell me “mad, mad, mad” although for her it sounds more like “maaa, maaa.”

We do not want to worry about her future and what it could be like. Will she ever talk? Will she be able to interact “normally’ with her peers? Will she have a fulfilling job and future? Are we the right parents for her? Will our other kids be happy with the life we have chosen for our family due to Madison’s medical condition or will they resent us, or worse - her? Being that we are so new to the world of language disorders, I am trying to learn all that I can so I can not only help Madison but educate my family on how our lives will be forever changed by childhood apraxia.

Last June, we were fortunate enough to move back to the United States. Madison has had two more seizures since but is making progress. She currently gets speech therapy, physical therapy, occupational therapy, cranio-sacral therapy, and hippo therapy. It may seem that is a lot of therapy but at this time we are just searching for answers to what will make her language progress. We were fortunate to see a specialist in November 2008 only to be told that Madison didn’t qualify for her program. Not only did she not qualify, but the specialist said that she may be mentally retarded. That stung. We were also told that her oral-motor skills were lacking. I said, "Oral-motor skills what are those and how do we fix that?" So we saw another specialist and for the last six months we have been doing oral motor therapy at home. She is making great progress but for us, it just isn’t enough.

I am concerned with the school system’s lack of knowledge on Apraxia. Even when I gave the team information regarding Apraxia it was meet with a lax attitude. I know that I could become a better "educator", but I am still learning about this disorder.

We are still fighting the battle of how much speech therapy is enough. It took me almost six months to convince our insurance company that she needed intense speech therapy. I had the two facilities pick out and times ready to go; only to be told by the insurance company they would only pay for one facility. So we had work our way in that system. Madison has been getting about 4 days a week of speech therapy and wouldn’t you know it the hospital is NOW instituting policy that they will only see children 1x a week...2x max. I have talked them into waiting until the end of the summer to determine if that is the best plan for Madison. What is so frustrating about all of this is that they see her progress and know that she has apraxia but continue to tell me that the research isn’t there to support intensive therapy. I know they are wrong I see the difference it has made but I don’t have the facts to fight them ... YET!

The future is still scary and unknown. I would have to say that is part of the problem. It feels like Apraxia is a "Word of the Month" disorder and nobody can tell me what her future looks like. It feels as if Apraxia is what autism was like 10 years ago. I feel so helpless at times and realize that the only way to feel “in control” is through education. On my good days I realize that my background in education was meant for a purpose. Even though I received my degree back in 1995 I think it prepared me for what will lay ahead. It at least gave me the “little” bit of knowledge of how the school system works. However, with knowing what I know, I also know when to say, “HELP” I do not know what I am dealing with.

To give my daughter the future she deserves and to help my family navigate this unfamiliar and overwhelming territory, I need to continue educate myself first. Attending CASANA's National Childhood Apraxia of Speech conference would provide this opportunity—an opportunity that would be life-changing for Madison and my entire family.