Grades 4-6

“I’m not going to lie, living with a diagnosis of verbal dyspraxia/apraxia is tough. Growing up having to fight for every word. The feelings of frustration when you can’t make yourself understood. The loneliness because no one truly understands what the diagnosis you live with entails. The hours in speech therapy when your peers are having fun. The slow progress with your speech. For some, the struggle in school due to poor literacy skills. The co-occurring diagnoses that can run alongside verbal dyspraxia/apraxia. I could go on but I guess you’re getting the picture.

It’s hard, it’s frustrating, it can be soul destroying at times but I promise you, these feelings are temporary. With hard work, determination, and support, a lot of the struggles that come with verbal dyspraxia/apraxia can be overcome.

Will they go away totally? No, but it will improve. As we grow older we also become more accepting of our diagnosis, we understand it more ourselves, and we find coping strategies.

Verbal dyspraxia/apraxia is a life-long diagnosis that presents itself differently over time and, yes, it’s tough, but so are you!”

If I could go back in time and say something to my past self, I would say that there will be an endpoint in your speech therapy journey. Once you do something over and over again continuously for years at a time, it could get ingrained in yourself if you like it or not.

Apraxia of speech is hard to live with, and you are not alone. Also, you might be living with other disabilities, as well. I will first admit it’s hard to be scared of teachers calling on you if you can’t get out what you are trying to say. You feel horrible about yourself and think what’s wrong with yourself. You will probably feel bad for the rest of the day. Because in your mind, the words you were trying to say comes out clear as day. When you needed it, you couldn’t get the words out.

“Everything will be okay. By the time that you are 22, you would have visited Las Vegas 4 times, Choctaw casino twice, Biloxi, Florida, Detroit, and Canada. You have a loyal group of friends who love you. These friends will not be able to see you in-person often, but they will invite you places. I know this is hard to see right now with the bullying you are currently experiencing. It’s rough thinking that out of a class of 37, half of your peers blocked you on Instagram. The other half make plans then cancel because something better came up. These people are NOT your friends. No matter how hard you try, their actions already show their true colors by the way they treat you and other classmates with disabilities. They are not worth your time either. Continue embracing Space Cadet Wannabe, the online comic you are currently working on. By the way, you will be a keynote speaker at the International Manufacturing Summit in 2018 for winning the 24 Under 24 Leaders and Innovators in STEAM and Space award. There will be a lot going for you. The people you make friends with will not judge your inabilities. They will embrace your talents, passions, and interests. Oh, got to go before my time machine breaks the space-time continuum…uhhh, I just narrated my future, but for the better.”

*A giant blackhole forms in the middle of the room. The time machine wraps around its gravitational pull propelling the machine back to the future. See you again in 2015…no…wait…2022! The blackhole spits out a self-tying shoe for 15-year-old Tessa to remember this moment by.

I’d tell my younger self that 1) You do not need fixing, and 2) You’re allowed to still dream. In having Apraxia, the self-esteem associated with not being able to talk like your peers is challenging and overwhelming. Reminding those with Apraxia and even my younger self that we don’t need to be fixed, but we just need to practice our speech, would go a long way.

Also, I’d tell myself that I’m allowed to have the same dreams as my peers. As a young girl I never dreamt of getting married or even having a date to prom because I felt those dreams belonged to others that had it all – or at least could talk correctly. Reminding my younger self that I am allowed to have those dreams and that I would find myself among peers that valued my commentary – even with a speech disorder – would be reassuring.

Do not back down when something is not right. You might have to fight for what you need and do not feel sorry for that. There is a light at the end of the tunnel. There are ups and downs with having CAS.

Neuropsychological testing is a wide range of tests, surveys, and activities, normally administered by a psychologist or specific therapist, which can be used to reveal academic, behavioral, communication, and cognitive strengths or challenges. What tests that are administered to a child depend on their age and the areas of concern

For children who are 3 years of age or older, the school district should provide testing in all areas of concern for that child. This includes communication, cognition, behavior, and gross and fine motor. Because the child is so young, the testing is based mostly on observations, surveys and completing some activities with the child. Once the child becomes school age (kindergarten) additional testing is done to see what strengths and challenges the child has in academic and cognitive areas. However, learning disabilities may not be identified until the child is older. Academic and cognitive testing is more accurate and provides more useful information if the child is 5 years old or above. Parents can also seek testing with outside agencies (see below “How Can I Obtain an Independent Evaluation”).

Neuropsychological testing should be repeated every 2-3 years.  Often it is done as a child is entering Kindergarten and then every 3 years after that.  If significant changes occur or the results are not thought to be accurate, then testing can be requested before the 3 year mark.

Neuropsychological testing can be helpful for IEP goals because IEP goals are developed based on a demonstrated need. Results from these tests can guide the IEP team in creating appropriate goals. For example, if a child’s performance on the decoding section of a neuropsychological test is well below average, the IEP team can create a reading fluency goal for them to address the deficit. These assessments can also help guide specific speech and language goals as well.

Yes! Neuropsychological testing can help identify challenges in academic areas such as math and reading, and with specific skills like memory and repetition. These tests can be used to help diagnose specific learning disabilities that are sometimes comorbid with CAS. Certain tests can also reveal behavior difficulties and provide evidence for processing disorders like SPD (sensory processing disorder), APD (auditory processing disorder), or attention disorders like ADHD (attention deficit hyperactivity disorder).

This depends on what tests the school is using and what your areas of concern are. Make sure you are clear about all of your areas of concern when talking to the school. If you have communication, academic, and behavioral concerns, that should require several tests to be done, possibly by different people. Ask which tests the school plans to use and what each assessment covers. Popular tests like the Woodcock Johnson and Wechsler Individual Achievement Test (WIAT) specifically measure academic skills, while tests like the Behavior Assessment System for Children (BASC) measure behavioral skills and focus.

If the school does not complete the testing you are asking for or if you do not agree with an evaluation done by your school, you can obtain an individual educational evaluation (IEE). The school district must provide you with information on how to obtain an IEE, and they should be required to cover the expense.