Intro to Childhood Apraxia of Speech

Do not be dissuaded from pursuing an evaluation by a speech-language pathologist if you are worried about your child. If YOU are concerned then you should pursue it. Many well-wishing and good-intentioned friends, family, and physicians may try to minimize your worries. My personal favorite was always, “You know, Einstein didn’t talk until he was four.” (Sigh.) Listen to your instincts about your own child. If nothing else a comprehensive speech/language evaluation will ease your mind and truly tell you if it is nothing to worry about. And don’t forget that speech pathologists are human and can be wrong. If you have already had your child evaluated and were told not to worry, yet your child does not seem to be progressing on his own, then pursue a second opinion. Additionally, if your child is currently in speech therapy but does not seem to be progressing, you may want to have another speech pathologist take a look.

A speech-language pathologist is the type of professional who is trained and qualified to evaluate your child’s speech and language development. As much as some other professionals have to offer (i.e. pediatricians, neurologists, psychologists, etc.), they do not have the special training and background in speech and language pathology that is necessary for the evaluation and diagnosis of speech/language problems. You should not rely on them to determine your child’s speech and language problems, although they can offer helpful information and referral. In the case of suspected apraxia of speech, parents will want to secure a speech language pathologist who has experience in the diagnosis and treatment of motor speech disorders or oral-motor functioning. Be prepared to request the evaluation be done with someone who has this experience. Do not hesitate to ask someone this question!

If at all possible, interview speech language pathologists and select someone to evaluate your child. I have nothing against new and/or young speech therapists, however, my thinking is that I want someone with solid experience to evaluate my child. Don’t hesitate to ask the evaluators about their credentials (go for at least a Master’s level with Certificate of Clinical Competence- CCC); and their experience (both in length of experience and population they have served). Children should be evaluated by clinicians who work with children! Also, if you suspect that your child may have apraxia of speech, ask the evaluator about their experience in diagnosing and treating children with this condition. Sometimes it is not possible to personally select someone, but I recommend still interviewing the person ahead of time.

Your goals could be answered by the question, “what do I want to know about my child upon completion of the evaluation?” Have goals for the evaluation and make sure those goals are communicated clearly to the evaluator ahead of time; that the evaluator understands your goals; and that the evaluator feels they can address those goals. An example is that when I took my son for a comprehensive evaluation, by phone and ahead of time, I told the evaluator that I wanted to know specifically why my son couldn’t talk (etiology); what was the name for his problem (the diagnosis); what could be done to help him (recommendations for treatment); and what kind of progress could be expected for Luke if he received appropriate treatment (prognosis). A good evaluator will most likely make a point of asking you your goals for the assessment, but regardless, don’t hesitate to speak up and offer them. I suspected that something had been missed by his early intervention therapist and so I arranged for a private evaluation.

NOTE: It is not always possible, even for the best of evaluators, to draw firm conclusions on diagnosis. Speech and language is extremely complex. The evaluator may need to go with “hunches”; recommend further specific evaluations by another person; or recommend trial therapy to try out their “hunches”. This can be frustrating but you should know it is a reality.

Your input in the evaluation process is extremely important. The younger the child, the more the evaluator will need to rely on your observations. It could be helpful to make a list of things you have noticed to take with you to the assessment – perhaps things that have made you worry. Write down your questions to take with you as well so you don’t have to rely on memory. Take a list of sounds/words or word approximations your child produces and what they mean. Additionally, many speech pathologists will welcome audio/video recordings of your child. This can be especially beneficial if your child does not verbalize to his potential in the evaluation setting. With older children, the evaluator will hopefully be able to elicit direct samples from them.

“The pure rage that stems from an unredressed injury can be more fearsome than that produced by the original wrong.”
(Gerry Spence, respected attorney-litigator and commentator on civil rights in America)

John sat on the couch in my office. His face reddened and his fists clenched as he talked about his son Chris and his contacts with the teachers and administrators at Chris’s school:

“My son is 13 years old and he still can’t add simple numbers. He can’t add 15 and 9. He can’t read either, and he’s been in special ed since he was six years old.

This year they put him in regular classes with some sort of collaborative teacher-they say that’s how they teach LD kids at his school, and that’s all they can do. And now he’s failing everything-everything! Last grading period-four F’s and one D. The only thing he’s passing is Science.”

As I sifted through several inches of disorganized documents that John brought to the meeting, John continued:

And when I complained that he isn’t learning, they told me it’s my fault because I’m not making him do homework! Do you know what a nightmare homework is? He’s exhausted when he comes home from school-where he hasn’t learned anything-then he has to spend two or three hours doing papers. It’s a nightmare. A real nightmare . . .”

I continued to skim through the documents-old standardized tests, letters from Chris’ teachers, school papers, report cards, IEPs from the first grade to the present-all mixed up. No current psychological or educational testing. John’s voice raised in anger:

“Pam, you don’t understand. They lie. They blame kids for not learning when they are not teaching . . . And they are stupid. They can’t teach, they can’t do anything. They are morons! And I told the principal that when I met with him last week . . . “

Tragically, John’s case is not an isolated situation. This father’s frustrations and fears had driven him to explode and demean school personnel. His reaction – an angry outburst – gave him short-term relief from his intense feelings of frustration. Did his explosion and insults lead to the development of a more appropriate educational program for his son? Of course not. Will it be more difficult for John to work effectively with school personnel in the future? Definitely. Will Chris be the ultimate loser? You bet!

The intense emotions experienced by parents often become their “Achilles heel” as they attempt to obtain an appropriate education for their child. When the local school system fails to provide the child with that critical “special” educational experience or offers “too little, too late,” many parents are shocked and angry.

These parents feel betrayed by the one system which they had trusted to help with the difficult task of educating their child with disabilities. Once lost, trust is hard to regain. As Gordon, the father of a fourteen year old learning disabled boy erroneously diagnosed by the school district as “seriously emotionally disturbed,” explained:

One of the great tragedies of parental disillusionment is that even if we finally find a good educational program, we know that our child has been damaged by people within the school system. We don’t know how severe or enduring the damage will be. The feelings of betrayal are often so strong and bitter that there will never be any trust by the parents.

Children enter our lives with excitement, anticipation and joy. We have high hopes and great expectations for this new life. How do we process the new reality-that this much-loved child has a serious “life disability?” Or that this disability may negatively affect our child’s ability to live a productive, satisfying, independent life? Parents must mourn the loss of the “perfect child” before they can become effective advocates.
Amy is a seven-year-old child who was diagnosed with autism.

Her mother Karen recalled:

“As parents, we are at an enormous disadvantage. When we discover that our child is disabled, we are in shock and grieving. We don’t know the laws or even that there are laws. We don’t know about the IDEA. We don’t know that we have any rights. We just trust for the first couple of years. Then something happens which causes us to become a little suspicious and we begin to look into things . . . and the worms come pouring out of the woodwork.”

Mourning is the natural, necessary and healthy process that begins when you learn that your child has a disability. If not handled appropriately, the mourning process can continue for years. You need to come to terms with your loss and mourn the hopes and dreams that may never be realized.

In common with other major losses, mourning encompasses predictable emotional stages. Typically, parents move back and forth between these stages, especially in the early months and years following their child’s diagnosis.

“I don’t believe it. He is just a late bloomer. All the boys in our family had to repeat grades. And look at us-we did okay!”

Millions of adults have undiagnosed, untreated learning disabilities and attention deficit problems. If they are fortunate, they find a “good fit” in their choice of work and are successful, despite their disabilities. Yet, most learning disabled adults lead lives that are deeply affected by sadness, disappointment and frustration.

Undetected, unremediated learning disabilities are causally connected to many other serious life problems-from juvenile delinquency and substance abuse to severe marital problems, domestic violence, and chronic unemployment. Typically, learning disabled adults develop negative views of themselves as lazy or stupid-or worse.

Most of these adults-numbering in the millions-have developed a strong, pervasive sense of having failed. From their perspective, they failed to live up to their own expectations and the expectations of others. Their negative view of the self and their identity as a failure permeate all areas of life, leading to interpersonal, socio-emotional, marital, vocational, and legal problems.

If parents continue to deny the seriousness of their child’s problems, these problems will not be appropriately treated, the child will not receive appropriate educational remediation-and the child is very much at risk for becoming another tragic statistic.

Unfortunately, parents who are in denial may find willing co-conspirators within the educational system. In some school districts, teachers are under a gag order by school administrators, forbidden to share their concerns about your child or to provide you with the information that you need about the child’s lack of progress. In other districts, school administrators who have the lowest referral rates for special education services receive special commendation.

“I just wonder how the psychologists and special education directors who so systematically work to deny educational services to our kids can face themselves in the mirror every morning . . .”

Intense feelings must find an outlet, and parents of disabled children have lots of intense feelings-including anger. Typically, these parents also feel frightened, helpless and out-of-control. To assert some sense of control, they may attempt to assign blame for their child’s problems-onto school personnel, the child, their partner, themselves, God, bad luck, or fate.

To avoid feelings of guilt and sadness, some parents externalize their emotions, blaming or faulting someone or something for the problems their child is experiencing. Sometimes this blame is warranted. As we will see in Mariah’s case, when parents believe they have been betrayed by the educators in whom they placed their trust, their anger and sense of personal outrage can be intense.

Mariah is a nine year old child with at least average intellectual ability. When she was two years old, a brain tumor was detected. Over a period of years, Mariah endured painful surgeries, chemotherapy and radiation therapy. These treatments saved her life, but left her with multiple challenges, including learning disabilities, orthopedic and speech problems, and an attention deficit disorder.

Mariah’s school district offered to provide a minimal level of special education services to this child. First, by using a “discrepancy formula,” they refused to provide any special education services aimed at remediating her learning disabilities, claiming that she had not fallen far enough behind to qualify for services.

Later, using a novel argument, they argued that Mariah was not eligible for services under a “Traumatic Brain Injury” classification because her brain injury was caused by a tumor, not “acquired” from an external injury. Not surprisingly, Mariah’s parents were shocked and angry.

Mariah’s mother, Elizabeth, spoke of her two year battle to secure appropriate special education services for her daughter:

“I wake up in the morning and begin making phone calls. The laundry sits along with other relics of normal life. The school district is so good at what they do-setting up roadblocks and denying educational services-that it is consuming my life just to get an IEP for my daughter.

I didn’t know how the system worked for the first couple of years. I just kept going from place to place, getting evaluations which I gave to the school. I thought that once they understood what Mariah needed, that would be it. Was I ever wrong! All those evaluations were just “filed.” Period!”

Elizabeth’s soft voice held a strong undercurrent of contempt:

“When I sit and think about the undeniable fact that my child was not provided with an appropriate education for years, not as a result of “blundering” or “poor judgment,” but intentionally, and that we were manipulated by intentional double-talk, my blood just boils.

Why is this type of thing different from any other scam? If school district personnel deprive children of their legal rights through the use of double-talk, flimflam, fraud, deception . . .this should be a crime under the law, and they should be held personally responsible for their actions!”

Some parents are angry about the hard choices-and the sacrifices-that must be made. That these choices and sacrifices are often difficult, is attested to by comments made by the father of two disabled youngsters:

• Both parents being able to work in their fields, or one having to stay home because the children’s needs are so great.
• Having to choose between one kid getting mental health care, or the other kid getting speech therapy.
• Being in crippling debt, or merely being in tremendous debt.
• Losing a retirement fund that was built up over 24 years or losing a college fund that was built up over 17 years.
• Having to choose between a psychiatrist or a psychologist solely on the basis of cost.
• Having to choose between marital therapy for the parents or bankruptcy.

Tough choices.

Other guilt-ridden parents internalize their feelings, turning their anger inward and blaming themselves for the child’s problems. Anger turned inward leads to depression. And depression, with attendant feelings of inadequacy, helplessness and hopelessness, leads to emotional withdrawal.

A tearful young mother sat across from me in the office. Kim’s nine year old son Justin had been diagnosed with a learning disability in reading and language (i.e. dyslexia) and attention deficit hyperactivity disorder (ADHD) nearly three years ago. Now in the fourth grade, Justin continues to have great difficulty reading, despite having received three years of special education services.

Justin’s temper outbursts at home had intensified-the family dreaded the frequent rages during which he turned his anger on himself and family members. His mother was overcome with feelings of guilt, inadequacy and depression. She saw a psychiatrist who had placed her on antidepressant medication.

Kim had experienced similar problems in school. She reversed letters and syllables and “read from right to left” for many years. As an adult, her dyslexia was diagnosed. Kim’s school failures had induced in her a pervasive sense of shame. Unlike her son, she became overtly withdrawn and depressed.

Kim’s own complex blend of personal history and emotions had created a compulsive need to apologize-for taking up my time, for not understanding what various educational tests measured, for being depressed, for being a “bad Mom.”

Based on the results of Justin’s earlier evaluations, which clearly identified his dyslexia, coupled with his ongoing inability to decode words, I urged Kim to contact her son’s school. Justin was in need of a more intensive program of remediation.

Kim requested the meeting, which was also attended by the principal.

That afternoon, my answering machine contained a lengthy message from Kim:

“Pam, I had the meeting. They were really mad at me. Justin’s LD teacher kept telling me that she gave Justin extra time and that she worked really hard with him. She even permits him to sit in the front of the room. I felt bad. I told her that I really did appreciate what she was doing for Justin. I told her over and over that I knew she was doing everything she could for him. I think I need to meet with her again . . .

When I told them that you thought Justin needed more testing about his dyslexia, they got upset. They asked me why I was talking with you. It’s like they felt that I didn’t trust them or something.

When I tried to talk about Justin’s dyslexia, the principal sat back in his chair and rolled his eyes. The principal and the LD teacher started talking and laughed. I know they were angry. I wanted them to know that I really appreciated everything they were doing for Justin, it wasn’t that I was ungrateful but . . .”

Remember John and his son Chris, earlier in this article? John’s inability to control his anger and frustration caused him to react in a way that would have negative consequences for his son Chris. Like John, Kim approached the school to request additional services for her child. What are your thoughts about Kim’s approach?

Like John, Kim’s emotions are her Achilles heel. Unlike John, Kim is a conflict avoider – polite, unassertive, afraid of authority figures, and terrified that she will anger or offend others. By being conciliatory, is Kim functioning as an effective advocate for her son? Are the school personnel at Justin’s school likely to accede to her request for additional testing? Has Kim persuaded the school officials to develop a more intensive program to effectively remediate Justin’s dyslexia?

Sadness is a normal part of the mourning process. Guilt, sadness and regret often merge into a painful tangle of emotions. In Justin’s case, his mother’s feelings of shame about her own learning disabilities and her lack of self confidence, combined with her pattern of conflict avoidance, made her an ineffective advocate for her child.

Many parents try to avoid experiencing feelings of sadness and regret, preferring to remain angry. Given the pain inherent in sadness and regret, this is an understandable impulse. Yet, it is essential to mourn the loss of the “perfect child.” Mourning the loss is not the same as repudiating your child or finding him less worthy of your love. Instead, it is part of the process of acceptance and resolution which will free you to move on.

THE INTIMIDATION FACTOR AND TRANSFERENCE

At a parent support group meeting, I listened to the following exchange between two fathers. Both men had children with learning and attentional problems.

The first father, a businessman who specialized in marketing and sales confessed:

“I always feel anxious and intimidated when I go to school for a meeting about my daughter. I start to feel anxious before I even get there. By the time I get to the parking lot, my stomach is in knots. I feel completely intimidated. When they ask me what I think, I don’t know what to say. Being speechless is usually not a problem for me!

I know my daughter is not learning. I know she is falling further and further behind. I know that I’m very worried about her, but I don’t know exactly what they need to do I’m not a teacher. I don’t know what to say-aren’t they supposed to be the experts?”

The other father, a respected physician and father of two children with disabilities, responded:

“Boy! Do I know that feeling well! There is something about the process-this team business where you sit around a table and it’s just you, the parent, on one side, and six or seven school people on the other. I always feel intimidated when I go to a meeting at the school.

I feel like I did when I was about eight years old and had to go to the principal’s office. was in big trouble then and I feel like I am in big trouble now!”

People are intimidated in different situations and contexts. Many of the decisions made for handicapped children are made by “teams” or committees. It is not unusual for IEP meetings to include five or six-or more-school district representatives-and one parent. In addition, these meetings are held at the school-unfamiliar ground for most parents. Given these dynamics, it is not surprising that most parents feel intimidated.

And how do people respond when they feel intimidated? Some respond with anger and defensiveness. Others wilt under the pressure.

If the parent also had difficulties in school, old negative memories and emotional reactions will often color his or her present feelings about schools, teachers, authority figures, and school meetings. The transference of emotions from past situations to present circumstances occurs in all areas of our lives. This transference can be positive or negative.

Remember Kim? Because her dyslexia was undiagnosed and unremediated, her personal experiences in school were predominantly negative. These past experiences led to negative expectations-which contributed to her fearful, conciliatory responses toward the “experts” at her son’s school.

However, if the parent experienced school as a helpful, supportive place, then positive feelings and expectations will tend to transfer to the current situation. These parents expect that the school will be a helpful environment for their handicapped children.

GETTING “STUCK”

Because the mourning process involves intensely painful emotions, many parents try to avoid it by minimizing or denying their feelings. Others get “stuck” in one phase-and fail to complete the process.

Like people who see themselves as “victims” of divorce, these parents remain angry, bitter, guilty, or depressed for years-or for life. Mired in negative emotions, they accomplish little of value for their child. You must not let this happen to you.

Failure to deal with reality causes other problems. As we have seen, when parents remain in denial and refuse to acknowledge that the child’s problems are serious, their child will not receive necessary educational services. Parents who obsess about the transgressions perpetrated by the school system often “burn out” without achieving anything that is of true value to the child.

However, there is another serious danger that many parents of disabled children face. Little has been written about this danger in the parenting and advocacy literature but it is of great concern.

OVERPROTECTIVENESS

Attempting to suppress feelings of personal guilt and external blame, many parents become overprotective of their child. Unable to protect the child from the disabling condition, they attempt to protect him from other difficult or challenging areas of life.

The development of overprotectiveness, fueled by pity and guilt, may be the biggest mistake that any parent can make in raising a child with a disability. Overprotective parents unwittingly create chronic dependency and “learned helplessness” in their children-a mindset that will often persist throughout that individual’s life.

These children grow up to be adults who believe that they “can’t” do things. Let’s look at the case of Paul. Paul is a young man who was diagnosed with learning disabilities while a young teen. He received special education assistance and finally graduated from high school.

After being fired from dozens of jobs over a period of years, Paul enrolled in a community college where he took a night course. To his surprise, he was successful.

Encouraged by his unexpected success, Paul returned to college and, after several years of part-time study, graduated from a four year university with a degree in special education. Paul had decided to become a special education teacher.

Paul’s teaching career had its ups and downs. He spent several fairly successful years in a small rural school system. Open about his learning disabilities, he asked for and received help from other teachers. Eventually, Paul obtained a job in the large urban school district where he had received his own education. He would be teaching elementary school children who had learning disabilities. He had achieved his dream.

But Paul had other problems which caused his dream to self-destruct. Pampered by over-protective parents, Paul had developed a personality style that was characterized by helplessness and a stubborn insistence on getting his way, coupled with a lack of empathy and an inability to see the perspectives of others. Paul firmly believed that his learning disability meant that he could not do certain things.

In his new teaching position, Paul was expected to teach children all academic skills – from reading and spelling to math. Paul’s learning disability was in the area of math. Despite his disability, the principal expected him to teach math. Paul refused. He also refused to accept help from an experienced LD teacher who offered to help him learn the necessary math skills. Paul’s response was, “You don’t understand. I’m learning disabled. I can’t do math.”

Eventually, Paul was terminated from his position. He moved back home with his elderly parents. His dream was dead.