The True Story Of The Real Life Little Mermaid

“Crying was viewed by the ABA people Melanie worked with as a “breakthrough” With no alternative means of communication, and no way to talk,  Melanie failed miserably on simple tasks that were well beneath her capabilities, and her confidence and energy for life, what was left of it, slipped away as well. The only thing Mel could do by the end of the entire school year from the discrete trial training was to be able to tell you how old she was when her birthday arrived in February. Mel was then 14. That is what Mel learned that year was how to say the word “fourteen”. Amazingly, that one word learned in an entire year, proved to both the school district and that one doctor the ABA program was working despite all the obvious regressions!” ~Robin Ketchum

…And The Problem With ABA

I want to first say that I am fully aware there are wonderful ABA therapists out there.  Some are members of the Cherab Foundation, some are parents of kids with apraxia.  I’ve have been hearing multiple stories for years now from parents who have experienced ABA therapy being used inappropriately with their child which has created increased frustrations or more severe issues, and due to the rise in children with autism who have apraxia believe people need to understand 3 key things:

1. ABA is highly inappropriate to use as a therapy to address apraxia and may even be detrimental.
2. ABA would have to be moderated not to address the motor planning impairments if your child has apraxia and autism.
3. ABA may not always be the right therapy for your child even if your child only has autism based on the evidence.

1,  2, and 3.  Why is ABA Inappropriate?  The Difference Between Apraxia And Autism.  What Is The Evidence?

Even though there may be a place for ABA therapy, especially to address some children with autism, as there is a rise in apraxia there needs to be awareness that ABA is highly inappropriate to use as a therapy to address a motor planning impairment, and may even be detrimental.  And even if you are just looking at autism, a recent study from Penn State found 64 percent of children with autism have co-existing apraxia.

I say may be, because again the evidence isn’t there to say any one therapy is always the best therapy for autism according to a 10 year meta analysis study published in 2011 in the journal Pediatrics.  Here are some quotes from that report.

“The strength of evidence is insufficient to provide confidence in observed improvements in cognitive outcomes with educational interventions, including the TEACCH intervention, and there is insufficient evidence for broad-based educational approaches, often based on applied behavior analysis (ABA) principles and computer-based approaches.”

“We encourage investigators to provide adequate detail as they describe their interventions to allow for replicable research. Ideally, investigators publish the treatment manuals they develop, which are then referenced in later research, but many studies made general references to their use of an underlying approach (e.g., ABA) without specifying the ways in which they used or modified the technique. Lack of detail about the intervention makes it difficult to assess the applicability of individual studies, to synthesize groups of studies, or to replicate studies.

Characterization of the study population was often inadequate, with 125 of 159 studies
failing to use or report gold standard diagnostic measures (clinical DSM-IV-based diagnosis plus ADI and/or ADOS). Because ASDs are spectrum disorders, it is difficult to assess the applicability of interventions when the population in which they were studied is poorly defined or described.

We identified more than 100 distinct outcome measures used in this literature base, not
accounting for subscales of many. The use of so many and such disparate outcome measures makes it nearly impossible to synthesize the effectiveness of the interventions…

We noted a strong tendency for authors to present data on numerous outcomes adjusting for multiple comparisons. Investigators also failed to report the outcome that was the primary outcome of a priori interest and on which, presumably, they based sample-size calculations (when these calculations were present). This may suggest the presence of selective reporting. We attempted to identify a primary intended outcome in the papers, but in almost all cases we were unable to do so.

Duration of treatment and followup was generally short. Few studies provided data on outcomes after cessation of treatment. “

Like autism today’s apraxia appears to present as a spectrum, with co-existing soft signs.  Even though there are many children with autism that have apraxia, there are key differences between the two diagnosis.   Apraxia is not a developmental or childhood disorder, unlike autism, apraxia is not a language disorder, however it can create developmental lags in language.  And apraxia typically today is rarely just a speech disorder as there are typically numerous other neurological soft signs.  This is why if apraxia is diagnosed or suspected a visit to the pediatric neurologist or developmental pediatrician is recommended to confirm or rule out those soft signs.   My son Tanner was diagnosed with oral and verbal apraxia, hypotonia, sensory processing disorder, dysarthria.  I took the following survey and you can see just about all that answered,  like my son, have children diagnosed not only with apraxia but soft signs and other diagnosis.  I highly suspect the 6 parents that answered their child only has verbal apraxia have younger children that have not yet been to the neurologist, or are not old enough for the soft signs to be apparent yet.

Intent

On Demand

Apraxia doesn’t mean you can never say it or do it, but the problem can be saying or doing what you want “on command.”  The reason for this is with apraxia if you are sick, stressed, or tired, the motor planning issues may become more pronounced.  This is why with apraxia you may hear a child say a word when they aren’t thinking about it, or while they are laughing or playing, but if you ask them to repeat it they can’t.  Again those with apraxia are fully aware of their limitations and already frustrated about their limitations.  They do require repetition, but it needs to be done in a way that doesn’t put stress on the child, like during play.

One example I used to get my son to repeat a word he would say is I’d use reverse psychology on him.  He would say a word he never did before and if you have a child with apraxia that is a moment to celebrate!  But instead of saying, “Say it again” as I knew he wouldn’t be able to from past experience, I did the opposite.  I’d laugh and say< Oh you said “finally” that means you are growing up and getting big now.  You know what, I want you to stay a tiny little baby so don’t say that word ‘fine A Lee” again! (I’d break down the word to help with his motor planning)  I would then put my hand over his mouth and he’d run away from me while I was yelling “Don’t say “finally” and he’d be screaming “finally” over and over as we were both laughing.  Even if he didn’t say it correctly I kept giving him the model as I kept saying not to say it -which got him to keep practicing, but it was all in fun.  The SLPs would get repetition while playing with toys and games, and a good SLP knows how to push a child with apraxia without breaking them.

ABA is a behavioral therapy that consists of trials. If there is a demand for a word or action based on a reward or punishment without help for the motor planning you are only going to increase the frustration.  Example would be if you have a sprained ankle and I use as therapy rewards and punishments to get you to walk on that ankle, I’m not helping the sprain and I’m going to increase frustration.  This is why you are at risk for secondary diagnosis such as PSTD if ABA is used as a treatment to address a motor planning impairment.

My son Tanner’s SLP in Florida is Dr. Renai Jonas CCC SLP who is an expert in autism and she teaches everyone that ABA is highly inappropriate to address a motor planning impairment and can be detrimental.  She has told me around half the patients that come to her with a diagnosis of autism are misdiagnosed and are instead apraxic.   My son Tanner was again diagnosed with oral and verbal apraxia, hypotonia, sensory processing disorder, dysarthria, but he was once misdiagnosed with autism.  All his other professionals including Dr. Renai Jonas agreed that was a misdiagnosis -but what if that was the first and only professional I took him to?

Below is the story of what happened to one teenager who was misdiagnosed for her entire school career.

Due to discrimination, and inappropriate IQ testing and inappropriate ABA therapy, Melanie fell through the cracks of life and remained nonverbal and on top of her global apraxia, she was also diagnosed with anxiety and PTSD the doctors and courts determined were due to the years of inappropriate use of ABA by the school system.

Melanie was misdiagnosed up to the age of 17 with autism and mental retardation and was provided with ABA therapy.  At 12 years old her school no longer allowed her to use alternative communication.  With no means to communicate and increased frustration Melanie in addition to profound global delays was also diagnosed with PTSD.

At 17, Melanie’s mom found the Cherab support group and learned about apraxia.  She took Melanie to a developmental pediatrician in NYC who diagnosed Melanie with profound global apraxia.  She was told that Melanie was not mentally retarded or autistic.   She was also told that Melanie would require at least ten years of intensive daily M -F therapy to have any chance of a normal life due to the lack of any appropriate therapies to address her global dyspraxia throughout her entire childhood, the psychological abuse of inappropriate ABA therapies which brought Melanie psychological conditions on top of her global dyspraxia.   The report went to the school who refused to change therapy, the case went to due process and the court ruled in favor of Melanie.

Below is Melanie’s story written by her mom Robin in 2003.

Real Life Little Mermaid -The Problem With Misdiagnosis

Photo of Melanie when she’s 19

Our Little Mermaid

“Our story is about our 19 year old globally apraxic daughter who for years was horribly misdiagnosed/misclassified/mistreated as autistic and/or mentally retarded due to inappropriate verbal based testing by the school. Like the Little Mermaid, unable to talk to tell us the horrors each day brought, Melanie was trapped like a prisoner in her own body. Hours each day for years Melanie was treated by school professionals as if she were autistic and mentally retarded, while in fact all along she was neither, and fully aware of all that was happening. The following story is true. We share it in hopes that it may prevent this horror from happening to another like our own “Little Mermaid” our beautiful 19 year old daughter Melanie.

This is where our journey begins: Our daughter Melanie was 3 weeks late and was delivered by emergency c-section. I had a temperature of 104 and the flu while giving birth and was unable to see Melanie for the first 4 days. During my pregnancy I was very careful to eat properly, exercise, and did not drink nor smoked.

Our daughter was late to roll over, sit, crawl, stand, and walk. She never said any sounds, but she would smile. Our daughter was not progressing like my other friends who had children around the same time. Mel had all of her scheduled check ups and appointments but nothing was ever said about her slow progression. I would discuss my concerns at each of her doctor appointments with always receiving the same answer. The answer being “don’t worry she looks normal and such a pretty baby nothing is wrong”. We were also told with Mel being the first child she would do things at a slower rate. In fact our daughter had severe global apraxia. Like most children today, the cause of Mel’s apraxia is unknown. Unlike most of the apraxic children today, Melanie has severe apraxia throughout her entire body.

Like most parents, we would have loved our child not matter what. We are parents who would accept diagnoses such as mental retardation or autism if they were in fact what our daughter had, but they were not. Back then, we didn’t know this for a fact as we do today, but we knew our daughter Melanie. Melanie went through her entire school career misclassified as mentally retarded and/or autistic. Unlike those Melanie was schooled with who had autism, it was clear from early on that Melanie wanted desperately to communicate, but just could not. Unlike those with mental retardation that Melanie was schooled with, it was clear Melanie understood what she needed to say or do, but just couldn’t. Thank God for websites such as CHERAB and books such as The Late Talker to help raise awareness about communication impairments like apraxia. Back then unfortunately, my husband and I never heard the word “apraxia” or how important that word would be for us to help Melanie. We had no idea that the word “apraxia” for our Melanie would mean “help”. The fact that we now know the word apraxia makes us extremely grateful. This one word has answered so many questions that we have had for so long We didn’t know just how to help our Little Mermaid find her voice to talk at all until almost two decades later, when Mel was almost 18 years old. This is also when we learned for a fact that our Melanie was not autistic, nor is she at all mentally retarded.

I will never forget our one appointment with trying to find help for our daughter when she was around two. We were told by this set of doctors that our daughter was not talking because “we talked for her”. We were told “do not allow her to eat for several days” and that would cure her of her inability to speak. We were also told we “needed to attend a set of classes of parenting as our approach was not correct”. They said our daughter’s not talking was due to our lack of parenting skills. Needless to say we never went back there again. I actually felt sorry for the parents that would believe this and attend those parenting skill classes.

At three years old we took Mel to a school district for testing for disabled preschoolers. We were told the results from their testing which was only observing Mel and talking to us that Mel was testing as “moderate mentally retarded”. My husband and I were horrified, we just knew this was not our Melanie. Unfortunately back then, and it appears now, children with communication impairments had their receptive and cognitive ability judged by how well they talked -or didn’t talk, as well as how they scored on verbal based IQ tests. Melanie could not talk, and even had trouble pointing on command.

It was suggested by the school district that since we both had careers that we would be better off by awarding Mel’s care to the state and putting her in an institution. When my husband and I refused this solution, they then placed her in a moderate mentally retarded class with other 3 year olds. We were also told around this time by a new by set of doctors that Melanie would “never amount to anything” and our only worry should be that she had a dry warm bed to sleep in at night. There were others in the early days who like us knew Mel was not mentally retarded. I still remember the first day of school Mel’s teacher pulling me aside and pleading for me to find another placement for Mel. She said she knows she is not mentally retarded but “something else”. She told me that “this is not the appropriate environment for her, try and make other arrangements”.

My husband put in for a transfer and we moved from Maryland to Pennsylvania . There Mel began preschool at Easter Seals and individualized therapy. Mel was making some progress with this new school and therapy. During this time while in their preschool setting we took Mel to several very well known facilities and they all said she was “not autistic” nor “mentally retarded” but could not pin point the exact problem. Their recommendations were to keep Mel in the Easter Seals program. Easter Seals continued to do well for our daughter.

Once our daughter turned 7 we had to start her in our school district’s program. Our school district along with our IU13 administered the following tests and procedures to determine that our daughter had autism and moderate mental retardation. (for those that don’t know –some of the following tests for my daughter Melanie would be comparable to showing a blind child a test with a picture of a dog and saying “what do you see in this picture”) We didn’t know the difference between verbal vs. nonverbal tests. Nor were we aware that with global apraxia, Melanie would more than likely not score correctly even on nonverbal tests

Review of records

Classroom observation

Instructor interview

Parent interview

Stanford-Binet Intelligence Scale

Test of Auditory Comprehension of Language Revised

Developmental Test of Visual Motor Integration

Developmental Profile II

Preschool Language Scale

Auditory Comprehension

Verbal Ability

Expressive one-word picture

Vocabulary test

Since Melanie was not able to answer, the results of these tests rated my child as once again having moderate developmental retardation, with her most significant difficulty being expressive language and attention span. Even though these tests also showed that Mel had severe difficulty with fine motor/perceptual and gross motor skills, the school did nothing to address these issues. Back then we did not appreciate that Melanie’s severe global apraxia was the reason she scored so poorly. Again, there was no Internet to check with like many of you have today.

What should be a happy memory –the first day of school…for Melanie, was not at all happy. Just starting out in school while most children go off to kindergarten, instead Melanie’s first day of school was not kindergarten, she was placed in a “trainable mentally retarded class”.

The next year, testing was also done on Mel to determine if the trainable mentally retarded placement was still applicable. They found their placement right of course by using more verbal based testing for my nonverbal child:

Expressive one word Vocabulary test

Preschool language scale auditory comprehension test

Stanford Binet IV

Results still showed moderate mental retardation with language expression weakness.

There was no testing done for first grade, as she remained in her current “trainable mentally retarded” class. Melanie found ways to “communicate” For example, each time they would sit down for circle time to sing songs Mel would take one shoe off knowing this would send her back to her seat. Once she was sent back to her desk she was given a book to look at and told to be quiet. Well being quiet was not hard for Mel since communication was not a strong point for her. Mel realized that she was unable to sing so sitting back at her desk was the answer for her to avoid frustration. This behavior issue went on for the entire time that Mel spent in the “trainable mentally retarded” class.

Second grade and more verbal based testing. Below is the list of testing that Mel had to endure once again:

Functional Academic Subtests of the Glassboro Trainable Assessment Profile

AAmentally retarded Adaptive Behavior Scales – Public School Version

Stanford Binet Intelligence Test

Comprehensive Test of Non Verbal Intelligence

Developmental Test of Visual Motor Integration
Receptive One Word Picture Vocabulary Test

Peabody Picture Vocabulary test

Test of Non Verbal Intelligence

These test results once again supported the idea that Mel had to stay in the “trainable mentally retarded” class.

Mel finally was able to get out of that one “trainable mentally retarded” class due to the fact that she was too old to attend that class any longer. During this class placement Mel was introduced to alternative communication which is where Melanie would use pictures (PECS) and other nonverbal means to help her communicate. Because Melanie learned how to communicate this way so quickly, and was now able to communicate so well, she proved to the school professionals working with her at that time that she was indeed smart and not mentally retarded. Not mentally retarded? Then must be autistic.

For third grade Melanie was put into an autism class. In addition to now knowing that Melanie was not mentally retarded, the new “trainable mentally retarded” teacher was not comfortable having Melanie in her class due to her alternative communication.

From third to fifth grade, Melanie was placed in an autism class in an elementary school about 30 minutes from our home. More verbal based IQ tests were given to Mel her first year in this class place setting:

The Vineland Social Maturity Scale

Stanford Binet Intelligence Test

Comprehensive Test of Non Verbal Intelligence

Developmental Test of Visual Motor Integration

Receptive One Word Picture Vocabulary Test

Functional Academic Subtests of the Glassboro Trainable Assessment Profile

AAmentally retarded Adaptive Behavior Scales – Public School Version

The results stated “Current test results continue to indicate global functioning pertaining to the moderate range of mental retardation. Melanie’s greatest strength appears to be her social awareness and desire to interact with others. Her greatest weakness continues to be with language development.”

Even though Melanie was not autistic, she did much better for those three years in the autistic class in the elementary school setting because that was the only time Melanie was allowed to use her alternative communication. Unlike in the classes for the mentally retarded, Mel was able to use her alternative communication and was mainstreamed all but 15 minutes each day. During this time Melanie had reading, math, history, science -all the regular subjects for a typical third, forth, and fifth grader -and received straight A’s and B’s!

Back then Mel enjoyed school and was the first one on the bus in the morning to go and the last to leave to come home. Mel enjoyed sitting with her peers at lunch without an aide and attending the socials, recess, field trips, and some classes with just her peers. She was during this time described as a happy well behaved child. This was a wonderful experience for Mel. For once she was able to enjoy school and be just like any other child. Mel’s friends learned a way to communicate with Mel using their hands by giving her two choices to answer their questions they had for her. To this day, Mel remains friends with one of her peer buddies she had met at this happy time of her life.

The following year Mel was to enter 6 th grade. Since Mel had done so well with alternative communication and with her peers we requested that Mel be moved back to our home school district and placed in our middle school with a alternative communication aide and in regular classes. Instead, this request was refused. For some reason unknown to anyone but the school who would not share the reason with my husband and I, Mel was sent to a severe autistic class that was a one hour drive from our home. We were told by the IU13 and our school district we had “no alternative” and that Mel was to report to that class the first day of school. We were also told they were within their legal rights by placing our daughter in that class. Even though we thought it was horror up till then –it now all takes a turn for the worse.

The first day of this new class placement we saw immediate changes in Melanie. Our Little Mermaid was no longer happy. She lost her smile, stopped eating, sleeping, and would vomit in the morning each day. We of course were horrified! We addressed these issues immediately with the staff and were told that Mel acquired some mental health issues that were “related to her autism and mental retardation”. We were told it was not the class, “it is Melanie”.

We felt like Melanie was drowning, we were drowning –we were desperate and pleading in our attempts to help our daughter. We called meeting after meeting trying to get Melanie out of this classroom setting –over and over. Mel was so afraid of this class that she began having whole body tremors. My husband and I sat in to observe this class on several occasions. Neither my husband nor I are autistic, and even we were frightened by that class. What could we do? Who could help us? Phone call after phone call, meeting after meeting. Each meeting we were unsuccessful in getting Mel out of that class. They finally agreed to do “some testing” and share the results with us in a January meeting. Again we didn’t know the difference between verbal vs. nonverbal IQ tests. Nor were we aware that with global apraxia, Melanie would not score correctly even on nonverbal tests. The following tests were administered once again:

Stanford Binet Intelligence Test Fourth Edition

Comprehensive Test of Non Verbal Intelligence

Developmental Test of Visual Motor Integration

Receptive One Word Picture Vocabulary Test

Functional Academic Subtexts of the Glassboro Trainable Assessment Profile

AAmentally retarded Adaptive Behavior Scales – Public School Version

Test of Auditory Comprehension of Language

Peabody Picture Vocabulary

Autism Behavior Checklist Form

Classroom Observations

Review of Records

No surprise that again the results showed moderate mental retardation. What was interesting this time however was the result of the Autism Behavior Checklist that Melanie’s teacher completed. In that report it stated, “Interestingly, Melanie, according to observations by her teacher, does not exhibit many characteristics which are common to the autistic population. “Interestingly, Melanie’s profile on this particular checklist appeared to be more similar to that of a mentally retarded individual rather than an autistic one”.

We thought for sure that meeting would get Mel out of that severe autism class placement since that autistic checklist done by her teacher showed no autism. We were wrong. They continued to keep Mel in that class and had a doctor come in and perform a psychiatric evaluation. The evaluation consisted of this doctor asking my husband and I a few questions, and observing Mel in this class room for a few minutes prior to a meeting that would take place right after his very short evaluation. There we sat and listened to his recommendations. He said Mel had a “very serious emotional disturbance and speech and language impairment”. He stated she should continue her placement in a special class for students with severe communication difficulties and should continue to receive regular speech and language services. He also stated that it would be necessary to “increase her level of frustration by insisting that she initiate more communication herself”.

In this same classroom for those children with severe autism, our daughter Melanie was getting worse each day. In the spring, Mel experienced her first breakdown. We were called by the school and requested that we pick her up immediately that she had become violent and making loud animal sounds. We immediately took her to our family doctor where he prescribed medications to calm her down and wrote and excuse for her to be out of school for two weeks. In that time, we had yet another meeting, another attempt to request a new class placement. We were told it was too late in the year for a change and if we did not return her back to that class they would “exercise their right for the truancy law”. At this time there was still no Internet, and we still did not know there were any other reasons other than what we were being told by all.

We placed Mel back into that class and saw the same issues once again but at a more intense rate. Melanie quickly learned that if she hit or scratched another child each day they would put her outside the school on a lawn chair to wait for us to come pick her up and take her home. Each day Melanie who tried to show all each day she didn’t want to go to this class to begin with -wanted to go back home.

We were waiting for placement in Hershey Medical Center as the school district and the IU13 wanted Mel admitted to the hospital for observation. Since Hershey had a week wait, and since the school district and IU13 legally knew they were not able to tell us to keep her home until placement was available like we wanted them too, the school district and IU13 wanted to call the police and have Mel handcuffed and taken out of the classroom so some facility would have to take her right away. They thought this was a great solution to their problem. At this point, they did not care what facility took Melanie, just as long as Mel was not home with us, out of their classroom. We refused them the right to call the police on Mel.

Melanie entered the Hershey Medical Center where she was evaluated and we were told that she was having an adverse psychological reaction to her inappropriate classroom placement. They wanted to release Mel the very next day as they saw a “very scared young lady without any behavior or violent issues”. They concurred with what we knew all along and said the behavior and violent issues were a direct result of the classroom Melanie was put in for those with severe autism.

We pleaded with the staff to keep Mel for a week for some testing and have a meeting with the school district and the IU13 requesting for a classroom change. They accepted our request and scheduled a meeting for the following week before discharging Mel.

The meeting went as we expected the IU13 and our school district refused to allow Mel out of this class placement and insisted that she attend there the following school year. The medical staff from the Hershey Medical Center told us before we unpacked Mel’s suitcase to hire a good education attorney. Those were the best words of advice we had heard up to this point.

When we brought Mel home I assumed that she would return to her old normal self prior to this severe autistic class placement. We now had a very different Mel. I called up to Hershey and was told since her two mental breakdowns her chemicals in her brain have changed forever and our daughter who we once knew would no longer be. My husband took 3 months off from work that summer as it took 2 of us 24/7 care for our daughter.

We brought Mel home and I called a friend asking for a referral for an attorney who specialized in education law. We sent up at appointment and went to discuss our situation. There it was suggested we get an evaluation done by a local certified school psychologist. We took Mel to see this particular doctor and she suggested something called “ABA training” and Mel at this time was 12 years old. My husband and I had never had heard of this method of therapy. We were told this was the only option for Mel for the following school year and it would be good for her. Again, no Internet. We did not know that ABA therapy –which is a behavioral therapy, is most appropriate for autistic children and can be detrimental to those who are misdiagnosed as autistic such as our Melanie. There is a difference between a child who is not talking because they won’t, vs. a child who is not talking because they can’t –but desperately wants to. Rewards and punishments will not make a child who can’t talk begin to talk –they will frustrate that child even more. We just didn’t know that back then. The severe autism class led to post traumatic stress, now the ABA would lead to dramatic regressions in skills that Melanie had already had. This is our experience with ABA.

Melanie was placed in a very small room for her “discrete trial training” for her “ ABA therapy”. During that time, alternative communication, Melanie’s only life line to communicate with others, was also taken away as Mel’s form of communication due to the fact that the doctor did not believe in it. Even though for years the school district and the IU13 supported it and said it was real they took it away immediately under that doctors request. Now Mel had no form of communication and was expected to sit in a very small room each day and try to motor plan tasks that she simple could not do even though she wanted to.

Mel’s training would begin each day at 8:30 and end at 2:15 . These were not even the regular school day hours but they only wanted to pay for Mel’s aide 29 hours a week so they would not have to give her benefits for 30 hours a week. Mel sat in this very small room and was strongly requested to do each activity over and over even though she could not do them at all. She could not do any of them due to her severe global motor planning impairment, but that didn’t stop them from asking her to do each over and over using punishments and bribes which meant nothing but torture. Melanie was not being taught how to overcome her motor planning impairment, nor was she being taught reading and writing and other things she desperately wanted to learn we now know.

Instead of all that Melanie could have been taught to help her with her impairment and education, with the ABA therapy they were trying to teach Melanie, who was now 13 years old, baby things she knew already like how to sort colors, count to 10, tell time, work with the alphabet, work with money. These are all things that Mel already knew and demonstrated she knew when she was allowed to use her alternative communication. Crying was viewed by the ABA people Melanie worked with as a “breakthrough” With no alternative means of communication, and no way to talk,  Melanie failed miserably on simple tasks that were well beneath her capabilities, and her confidence and energy for life, what was left of it, slipped away as well. The only thing Mel could do by the end of the entire school year from the discrete trial training was to be able to tell you how old she was when her birthday arrived in February. Mel was then 14. That is what Mel learned that year was how to say the word “fourteen”. Amazingly, that one word learned in an entire year, proved to both the school district and that one doctor the ABA program was working despite all the obvious regressions!

Mel’s aide would keep a chart to chart her progress. Well each month there would be a monthly meeting to discuss Mel’s chart. Mel’s behavior and emotional well being deteriorated each month –however the doctor in charge did not appear to notice.

During ABA therapy Mel was never able to be with her school peers even for lunch. Mel and her aide had to eat alone each day. Mel’s socialization time? This is where my Little Mermaid becomes Cinderella, they had Mel deliver attendance sheets, wash, dry, and fold the towels for gym class, and clean out the learning disabled class fish tank.

I remember around this time Mel began to break down even at home. She would hold a glass to her mouth for over 20 minutes and appear to be unable to complete the rest of the task needed to drink the water. I brought that to the attention of the ABA teacher and she said she was unable to answer my question as to why Mel was all of a sudden having difficulty motor planning now things she had never had a problem with before. They then watched Melanie with a glass of water. Melanie held her cup to her mouth for over 20 minutes before they helped her follow through with drinking. We were not aware this was an activity they were also trying to “teach” her while at school. Around this time Melanie appeared to lose use of the right side of her body.

What we also didn’t know was that these were warning signs of the start of Melanie becoming catatonic for the next four months.

My husband and I now tried to get Melanie out of that discrete trail training “ ABA ” program. No one was on my side except for Mel’s private medical doctor. We once again took her out on a medical excuse for the rest of the year and then informed them that she was not to have that training the following year. The doctor that was over seeing the program quit as well as Mel’s attorney. Why did Melanie’s attorney quit?

You see Mel’s attorney was friends with the doctor who believed ABA therapy is just what our Melanie needed. This attorney however, the only one who up till this point seemed able to help us help Melanie, stated she could no longer represent Mel in our fight to have Mel receive a fair and appropriate public education because we did not want her in ABA therapy any longer. I would never had agreed to the ABA discrete training program in the first place if I would have known what the program really was. It was never really explained that well and I only learned each month as time went on.

Now here we are with no attorney, no program, and once again fighting with the district for an education for our daughter. Our daughter at this point was now unable to do simple things. She was no longer able to dress herself, feed herself, walk herself, and she no longer smiled. Mel’s whole body was just very stiff and she would not move from where ever you sat her. Mel would stay there for hours if you would have let her. We did not know where to turn as we just lost our attorney and the school district was still insisting Mel had a medical issue and not an adverse reaction to that ABA discrete trail training which is ways was worse than her being put into the class for severe autism. What I find upsetting is that doctor never did any type of testing before beginning that program. We met with her for one hour in her office and there she told us Mel had autism and needed this program called ABA . She never did any testing. She came up with that diagnoses after only seeing Mel for one hour with us. Mel was pleasant that day and tried hard to communicate with her but she insisted Mel had autism and the only way to break the autism was with this program. We explained to her about her motor planning issues and she just contributed it to her autism.

This ABA situation left me with no attorney and no plan for the following year for Mel’s school placement. I decided to hire a parent advocate and try to have Mel placed back in her local Middle School and try alternative communication once again with some classes with her peers. This started yet another unsuccessful series of events with Mel’s education. The parent advocate had done his job and Mel was getting ready to start the 7 th grade over again with an alternative communication aide and some classes.

Mel’s following year was back in our local school district middle school with a alternative communication aide. The aide they hired never worked with any one that had a disability nor did she have any alternative communication training. For three months, Mel sat in a few classes and was expected to be quiet. Mel’s aide actually had a mini breakdown due to family issues and Mel was taken to the principal’s office for the rest of the day while the nurses attend to her aide. Mel kept asking to go home and the principal refused, as he did not want me to find out what happened that day with her aide. Then they hired a consultant to come in and replace that aide until they could find another one. For three months Mel did well with that person and the teaching staff was seeing a very positive change in Mel. The school district refused to hire her full time, as she wanted $1.00 more an hour then what they were willing to give her. So she left and took a full time teaching position.

The school district once again hired someone else and again it was not a good match. This is where Mel turned her voice off for the next few years because of her experiences with this individual. This teacher was always “correcting” Mel who could only talk in simple phrases with simple words, and telling Mel that she talked “like a baby”. For example, If Melanie had to go to the bathroom and asked if she could go “potty”, instead of letting Melanie just go, this teacher would embarrass Melanie in front of her peers. She did this in front of her classmates as well as myself. I would insist she not do this to Melanie and tell her why, and this teacher would get very nasty with me. Melanie did not know how to say bathroom, or other words that were more acceptable for those her age. So Melanie said nothing. My husband and I tried to explain this, yet we were always made to feel that it was our fault Melanie was the way she was.

Around this time Mel was diagnosed as having post traumatic stress related disorder from her school treatments, and started to experience panic attacks in school. The aide was directed by Mel’s doctor to call me when an attack would occur so I could pick her up immediately. The aide refused to cooperate and there were a lot of days I would pick Mel up and her cheeks were scratched raw from her attacks. We also placed medicine prescribed by her doctor with the school nurse and yet they never allowed Mel to take this medicine while having an attack. At this point, Mel’s doctor was very concerned about her medical health while at school.

Mel’s aide had another part time job and she received permission to leave early each day to get to her other job. Mel was placed with a student in a class that was not assigned to her and expected to be quiet for the 90 minutes until it was time to go home. I finally found out a few months later and had it stopped immediately. From that day on Mel’s aide was very nasty towards Mel and towards me too.

Mel developed stomach ulcers. She would have headaches, and panic attacks on almost a daily basis from that school experience. Mel’s aide would force Mel to eat her lunch on a daily basis even though Mel would say no and I would pick Mel up each day with vomit on her clothes. With this happening, I was able to take Mel out with a medical excuse and request homebound instruction.

Then finally we had a ray of hope for our Melanie. Mel was asked to participate in an “Every Day Lives Conference” regarding alternative communication and that is where we met Tracy . Tracy is an OT with her own private practice and she sat in on one of the conferences. Tracy approached me immediately after the conference and started to ask me some questions. She then offered to do a private evaluation with Mel and help us with Mel. During that evaluation Tracy confirmed severe global apraxia. Tracy took the time to explain what exactly that meant and it all just made sense. “global apraxia” We finally had an answer to Mel’s disability.

After meeting with Tracy and receiving her report, I wanted to learn everything available about apraxia. I am so thankful for the Internet as when Mel was small there was no Internet. I remember typing in the word apraxia and just a wealth of information appeared before my eyes. I went to the CHERAB site as well as the other sites and began reading and studying all the information on these sites. I must have read and reread for at least a week these different sites.

Once I read and reread the sites, my journey began trying to contact individuals for personal guidance. I really thought this was going to be an easy task. I was so surprise to find it was the opposite. I know this would not have been the case if I called CHERAB first. Unfortunately, CHERAB was not the apraxia organization I tried to contact first.

I first spoke to a woman named Sharon from Casana an apraxia organization, and I clearly received the impression she was not interested in my story due to me having an older vs. younger child. I then called a well known speech therapist affiliated with this same apraxia website only to find out he too was not interested in testing my daughter. I remember this SLP telling me my daughter was “too old” and that he only worked with “younger children”.

The lost feeling once again appeared for me, my ray of hope faded. After attempting to contact this one group for apraxia and through it was unable to find anyone to listen to my story or help my daughter, at that time I Unfortunately didn’t try to contact CHERAB, the other apraxia organization I had found.

Mel did start the Schreiber center and just at that time we were invited to attend a dinner meeting with Nancy Kaufman CCC SLP which was hosted by CHERAB through the New Jersey Speech Hearing Association in Atlantic City . I am so thankful that we attended that meeting. Mel’s speech therapist was able to sit next to Nancy at the dinner and discuss our situation. That was a wonderful experience for our speech therapist and myself. This is where I met Lisa Geng, President of CHERAB Foundation for a brief time. She was being pulled all over and didn’t have a moment to sit down. I had never tried to contact Lisa due to the other responses I had received from the other apraxia group. I have to admit I just had this feeling that no one really cared nor wanted to help due to my daughter’s age.

Lisa was different right from the start. In spite of how busy she was, Lisa has this very outgoing and positive personality. I wanted to be able to speak with Lisa either while eating or at the meeting but she was just so busy. In the meeting parents were discussing NN PROEFA 369 . I never had heard of NN PROEFA 369’s so I listened with great interest and decided that I was going to call Lisa and find out more about NN PROEFA 369. I did call Lisa and left a message and she did return my phone call and took hours explaining all about the NN PROEFA 369’s, plus answered all of my other questions I had that day. Mel started taking the NN PROEFA 369’s and I truly believe they are part of the huge positive differences in Melanie today.

Mel has been on many medications with trying to help with her PTSD and her anxiety from the past school experiences but never wanted to take them. Mel would always give us a very hard time and refuse to her medications. We kept trying new ones but Mel still refused. Mel now will remind me each morning that she needs to take her NN PROEFA 369’s. I asked Mel and she said they are making a difference.

I was so excited for “The Late Talker” book to be published which Lisa Geng Co authored. At the same time, part of me is sad that book was not out in time for my Melanie while she was small. Trying hard to keep from what happened to our Mel from happening ever again, I bought several copies thinking I would keep one myself and have given them all away. I gave a copy to Schreiber Pediatric Rehab Center for their therapists to read. It is now in their library for any and all of the therapist to read. Mel’s speech therapist told me the other day a mom brought the book in to share with her. I am so thankful that there are so many reading The Late Talker book as I believe it will help open more doors for our children.

Thanks to Lisa Geng and her online support group through CHERAB I was able to attend our last IEP meeting and speak with confidence regarding apraxia. I remember them going over the IEP that they had written without any input from myself or Mel’s team of therapist and I just kept asking them how they were going to accomplish that particular goal with Mel’s apraxia. They were so tired of me questioning them and explaining to them about apraxia and everything that I had learned they finally threatened me. I have to admit I was very quiet after that. Mel’s doctor wrote the threats down and submitted them to my attorney for his records. Looking back being threatened that day was a good thing because I was making a difference in that meeting. The knowledge I was sharing and the questions I was asking they were unable to answer and that made them very upset.

We kept Mel out of school for several years with her medical excuse and on homebound instruction. During this time we were disagreeing with current evaluations that the school district wanted to do. The following are evaluations they wanted to pursue and we refused until they could answer further questions:

Psychiatric – No specific tests

Non/Verbal Intellectual/Academic Ability

Non/Verbal Achievement

Adaptive Functioning

Perceptual/Motor Skills

Life/Ecological Skills

Occupational Therapy Evaluation

Physical Therapy Evaluation

Speech Therapy Evaluation

Achievement Evaluation

Classroom Observation even though Mel was still on homebound instruction

Review of Records

During that time of not agreeing with our school district we were forced to hire yet another attorney to help with trying to provide Mel with FAPE. Our superintendent insisted on us coming into his office and meeting with their attorney while we had no attorney and discusses a settlement. They wanted Mel out of their school and wanted us to go away. I immediately called the state dept. of education and was told to hire an attorney. We hired an attorney and he has been with us now for almost three years.

Once we found out the diagnoses our attorney scheduled a meeting to discuss the school districts and the IU 13 intentions regarding Mel’s apraxia. This meeting only resulted in the school district requesting that they would be able to do their own evaluations using the IU13 staff therapists. This of course made me very upset due to the fact they had the last 10 years and was unable to diagnose apraxia with the many evaluations and consults they did!

We did give permission for the evaluations but 6 months went by and the school district never followed thru with their evaluations. Our attorney then scheduled yet another meeting to discuss their lack of following thru with evaluations. There it was decided that we would take Mel to the Schreiber Pediatric Rehab Center for an evaluations and therapy. It was decided the school district would pay for the therapy costs and transportation costs. We started Mel at Schreiber in January of 2002. The school district has never paid for any of the costs for therapy or transportation to this day. Even though it was it writing they refuse to pay.

Mel had been in therapy now for almost 12 months and the school district called an IEP meeting trying to get Mel back to school. I made the mistake of going without our attorney and took one of Mel’s doctors with me. I was trying to create a cooperative atmosphere and decided it would be best to have Mel’s attorney be absent from the meeting. That was a big mistake as I was threatened in that meeting by their special Ed consultant.

I was fortunate that Mel’s doctor wrote down the threats and placed them in writing to our attorney. Mel has now been diagnosed with “Other Health Impairments” even though they had not done any current testing with Melanie nor had they worked with Mel.

Since I refused to accept their IEP the school district called a due process hearing against us. The school district is requesting Mel return to school and stop her therapy program. A program that Mel has made gains on and return to a life skills class. Also, they wanted the right once again to evaluate Mel even though they never followed thru the first time. I had given the permission but requested that my husband and myself attend with Mel plus her therapist or doctor be present. The school district/IU13 did not want to accommodate our request.

The Hearing Officer was very impressed with the progress Mel had made from her private therapy/home program that he ruled that Mel would not have to return to one of their class placements. He noted that Mel had made more progress in my private program then she had the 12 years they had her in their education system. They were granted the right to evaluation but with all of my stipulations. This of course made them very angry. I told the Hearing officer I was never opposed to them having evaluations done once again but with Mel’s current PTSD it was in everyone’s best interest they be done the way I had stated to them in a previous letter. I was hoping by having them do evaluations once again that they would see the apraxia and start to work with us. I truly wanted everyone to work together as a team and help Mel with her apraxia. After all we were taught our school district and our IU13 only wants what is best for our children. Our school district and the IU13 just became even more upset and we started to see their anger thru educating our other two daughters.

We decided in order to protect all three daughters it was best we move out of our school district and our home of 16 years and into another school district. That really upset our school district/IU13 as now they lost their right to evaluation Mel. Mel suffered with her PTSD for the last 8 years and once we moved her PTSD went away. Mel still has other mental health issues that are not resolved yet due to her last 12 years of school/IU13 experiences.

Today Mel is attending Schreiber therapy center 4 days a week with the hopes of increasing it to 5 days a week. We also follow up with a home therapy program as well each day. The Schreiber Center has changed Mel’s life. Mel is responding very well to the therapy. The changes are remarkable for us to see and all the staff at Schreiber comment on Mel’s changes that she has made. I have learned from Mel you do not need speech to remind someone of something. Mel goes to the kitchen cabinet pulls them out and brings them to me. Mel will say “Med please” now. Without the appropriate motor planning therapy Mel has received from Schreiber I do not believe she would have been able to motor plan in the past to get the NN PROEFA 369’s out of the cabinet and hand them to me. (NN ProEFA 369 is a fish oil)

Mel’s very first visit to Schreiber was a very memorable one for everyone. Mel walked very stiff, no facial expressions, no voice, and could have been a human statue. Now almost two years later Mel greets everyone in the morning with a smile and a verbal good morning. She is very happy and moving with ease. I have listed below a few things Mel is able to do now that she was unable to do before her therapy started at almost the age of 18.

Mel is now able to walk across a balance beam.

Mel is now able to throw a ball.

Mel is now able to walk backwards on a treadmill.

Mel is now able to go down the stair alternating her feet with verbal cues.

Mel is now able to do a 50-piece jigsaw puzzle on her own. This we were told due to her mental retardation she would never be able to do by the school district/IU13.

Mel is now speaking after having loss her voice for 6 years.

Mel is able to motor plan sticking out her tongue on command.

Mel is now able to blow bubbles and candles out.

Mel is now starting to say her ending sounds to her words.

Mel is now able to answer questions by choosing the correct picture

Mel is now able to match picture to picture/ letter to letter. This was a very difficult motor planning issue for Mel.

We were also very fortunate to have Mel examined by neurodevelopmental pediatrician Marilyn Agin MD recently. Dr. Agin is the Co Author of The Late Talker book. I have learned even more about Mel and her disability. Dr. Agin’s visit gave us more of an insight to Mel’s disability and from her visit we are planning on adding to Mel’s therapy schedule. We are excited to be able to communicate when needed with Dr. Agin regarding Mel’s therapy issues and hope to see her once a year so she can see the changes in Mel. We finally feel that Mel has everyone she needs in her life to help her reach her goals and her dreams. It is a great feeling to have the school district and the IU13 personnel out of our lives with regards to our daughter’s education and therapy.

This has truly been a very long journey for Melanie and our family. I wish I could say our journey is near the end but it is just beginning. Dr. Agin believes we will be in intensive therapy for years with Mel to bring her back from the years of abuse and lack of appropriate therapy to address her motor planning impairment. She assured us that we will see changes. Dr. Agin and other professionals now tell us that the changes will be slow and steady. This is wonderful news to us. For so many years all we were given was no hope for our daughter. We just kept being told to get Mel ready for a work voc shop. One could only imagine the frustration Mel would feel there trying to do tasks that her motor planning simply would not allow her to do.

My goal is that this story of Mel’s is out there so others will not have to endure the pain and suffering that Mel has endured all these years. Mel now has mental health issues that could have been avoided if this whole experience would never had happened. To me it is just amazing that to this day our school district and IU13 refuse to believe the apraxia even though we have documented proof that she is making gains. Mel is entitled to two more years of education and therapy from our state but with the continued fight with our old school district and IU13 we gave up that right. Our case is now in federal court. We will have to battle our disagreements out in front of a jury one day. We know in our hearts this will truly not be a pleasant experience but one we felt we needed to move forward with. We want to show Mel that she is a person regardless of her disability and has the same rights as everyone else to be treated fairly by the school district and our IU13 without discrimination with regards to receive a fair and appropriate education. Unfortunately, Mel never received even one year of FAPE during her whole education career.

We tried everything to help our Mel over the past two decades taking her from professional to professional. Most professionals gave up on Melanie –but I never did.  One doctor put Melanie on a drug for Alzheimer’s called Namenda with no success, but soon after that she started having severe seizures.  Melanie had to be put on “high” levels of the seizure medication Depakote.

I fear, and yet know in my heart there has to be other Mel’s out there that are yet to be diagnosed correctly or have been diagnosed correctly at a later age. I would truly like to see a support network started for those parents like myself. I believe we can all learn from one another and help support one another. I truly hope other parents will come forward after reading this story and we can start a network to help others.

I would just like to say thank you for taking the time to read our story about our daughter Melanie. I believe as time goes on we will learn from Mel that it is never too late to start a therapy program. Yes the progress may be slow and steady but at least there can be progress even when you are a teenager or young adult.

Please feel free to contact me with any questions you may have with regards to this story.”   ~Robin Ketchem

Melanie’s story teaches us many things including the importance of early intervention, appropriate testing and treatment. It teaches why the world needs more compassion for those with impairments of communication, as well as why, once again, discrimination, is wrong. Melanie’s story also raises awareness as to why in the world of speech disorders names such as “developmental apraxia of speech ” or “childhood apraxia of speech” are cruel to give to a child who has a condition that is not in itself a cognitive or receptive disorder but as one does not outgrow it, a teen or adult with “CAS” or “childhoodapraxiaofspeech” implies there are issues in cognition.

• A Voice For A Teen Who Grew Up With Apraxia
• PH.D. (Mom)?
• From Struggles With Apraxia To Honors English
• YADA Support Group For Teens And Young Adults With A Speech Impairment
• PhD (Mom)? 
• Cherab Support Group/ Apraxia.org

LISA GENG