House of Krause

Blogs are different than regular websites in the fact that they continue to roll one continuous page.  This is not always user friendly.  It would take a new reader hours to go back through a hundred plus posts.  I decided to re-post from this time last year since I have been on the subject of the Nancy Kaufman clinic.

I’m scripting, it’s working! 2/09

There’s a reason speech pathologist spend years and years in school! There is so much involved. The fine details of speech are honestly mesmerizing. Much of the time at the Nancy Kaufman conference my mouth was hanging open and my brain was on overload. As a parent trying to really take it all in was difficult. However there are a lot of things I was able to grasp and have already begun implementing with Luke,  and It’s working!!! Nancy started off with this analogy; O.k if you have a child that has very little or no spoken language it’s likely you would start introducing sign language, hopefully the child would be able to pick up some approximations for signs. We certainly would not expect a young child to make a perfect ASL sign. But if the child makes the attempt at it, we would be very happy about the effort and would quickly learn what the child’s sign meant for that particular item. Thus the same thought should be in effect when it comes to spoken words. If a child can learn to make best approximations (to his/her ability)  for words, it’s a starting point. As time and therapy goes on you can help the child bridge the gaps and fill in the missing parts! Example Luke’s best word approximation for “Ball” may be “Ba”. L’s are very hard we can fill in those l’s later on when he gets them. Luke says “Pu-Pa” for purple. R’s again they are hard, they will hopefully come in time. Breaking down words to their simplest form and encouraging the child to make best word approximations. I love the example of breaking down the word “people”. If Luke pointed to a crowd and said “Pe-Po”, I would know what he meant. Just like I understand his signs even though most are far from perfect. That’s just one general idea. Hopefully that makes a little sense.

Another great tip that is helping so much is always putting the answer in the question.  To ask an Apraxic child to come up with answers out of thin air is extremely hard.  Example if Luke was trying to open the door I might say, “What do you want me to do?” but way better for me to say, “Do you want me to open the door?” even further I would say, “Do you want me to open door?”  The answer to my question is fresh in his mind, it was the very last thing I said. “Open door?”  Then I may ask him, ” Tell me Luke, open door?” Luke responds with ” Oh-pa,  do.”  Yes, it’s far perfect but again I’m happily accepting it and praising him big time for his attempt. Nancy was talking about scripting, a lot!  Helping your child write your his/her dialog. I’ve found a new passion of Luke’s, cooking! It’s a great place for scripting. It would be something like this;

“Luke, do you want to open eggs?”

“Tell me, open eggs.”

With my help and prompting he says, “Oh-pa,  eh-g” then he gets to open the eggs.

Even if I have to break it down one syllable at a time, “Oh- pa, eh-ga.” (open egg)

Then again same thing, “Luke, do you want to crack eggs?”

“Tell me, crack eggs”

He says, “cak, eh-ga” (crack egg)

and so on, “Luke, put in?”

Walk him through, “Pu-t, eh-n” (put in)

When you script over and over suddenly you will hear words come spontaneously. It must be that you are training the brain again and again until the cues fade, it just comes automatically. Now Luke goes in the drawer, pulls out a spoon and says, “Ma-ma cook?” I love it!

Another helpful hint is finding the child’s to die for items and activities especially when you are doing speech homework.  Naturally, Luke is  much more motivated when the reward is great! So I’ve put certain things aside and made them only for homework time. Makes homework more successful and a very exciting time for him!

These are just a couple of examples of what Luke’s is working on. I would encourage any one out there to go to the conference for yourself. See the methods over and over so you can get a good grasp of it.  Nancy Kaufman has conferences all over the country and even Canada! See her website for details. If you still wondering if your child even has Apraxia of speech you can send a video of your child, she will take a look at it, and she will call you back to discuss her evaluation. Also see her web site for more info. click here. If you are in the So. California area you can also see Megan McCann at Lucid speech in Murrieta. She is also an expert in the field of Apraxia, trained in the Nancy Kaufman methods, and conducting research in the field of Childhood Apraxia of speech. She sees many patients who travel a distance even just for an evaluation. She also takes questions on her website at Lucid Speech and Language.

Right after I posted yesterday I came across this video.  It aired nearly a decade ago.  The information is still right on target.  I hope more people continue to raise Apraxia awareness, it would sure help out a lot of questioning parents.

Watch this video.

♥ If I knew how to make this post light up, flash, or blink I would!  Another Apraixa mommy sent it to me this morning….

Scientist First to Characterize Novel Syndrome of Allergy, Apraxia, Malabsorption

Newswise - A landmark study conducted by Children’s Hospital & Research Center Oakland is the first to reveal a new syndrome in children that presents with a combination of allergy, apraxia and malabsorption. Autism spectrum disorders were variably present. Verbal apraxia has until now been understood to be a neurologically based speech disorder, although hints of other neurological soft signs have been described. The new study, led by Children’s Hospital & Research Center Oakland scientist and pediatric emergency medicine physician, Claudia Morris, MD, and Marilyn C. Agin, MD, a neurodevelopmental pediatrician at Saint Vincent Medical Center in New York, however, suggests that the symptoms of verbal apraxia are, at least for a sub-group of children, part of a larger, multifactorial, neurologic syndrome involving food allergies/gluten-sensitivity and nutritional malabsorption.

“While it is critical to treat verbal apraxia symptoms that often include severe delays in expressive speech production with speech therapy, we need to start asking why these kids are having these problems in the first place so that we can identify mechanisms we can actually target to treat the cause of the symptoms,” says Dr. Morris.

Published in the July/August issue of Alternative Therapies in Health and Medicine, the new study takes a major step toward identifying the potential mechanisms that may contribute to apraxia symptoms. In the study, Dr. Morris collected information from nearly 200 families with children who suffered from verbal apraxia in order to better characterize the symptoms and metabolic anomalies of a subset of children. The data clearly demonstrated a common cluster of allergy, apraxia and malabsorption, along with low muscle tone, poor coordination and sensory integration abnormalities. In addition, Dr. Morris was able to gather laboratory analyses in 26 of the children, which revealed low carnitine levels, abnormal celiac panels, gluten sensitivity, and vitamin D deficiency among others. All children genetically screened carried an HLA gene associated with gluten sensitivity and celiac disease. “The sample size is still small and should be interpreted with caution,” says Dr. Morris. “However this is of particular interest given the recent publication by Eaton and colleagues in the July 6 online edition of Pediatrics demonstrating a greater than 3-fold risk of autism in children born to mothers diagnosed with celiac disease. This brings some credibility to the anecdotal reports of gastrointestinal and behavioral improvements in children with autism spectrum disorders and/or verbal apraxia when eliminating gluten from their diets. Although the implications of these observations remain to be determined, this association and the utility of dietary modifications warrant further investigation, particularly if we can identify a genetically vulnerable group”.

Most significantly, the data indicate that the neurologic dysfunction represented in the syndrome overlaps the symptoms of vitamin E deficiency. While low vitamin E bioavailability may occur due to a variety of different causes, neurological consequences are similar, regardless of the initiating trigger. The study suggests that vitamin E could be used as a safe nutritional intervention that may benefit some children. Growing evidence support the benefits of omega 3 fatty acid supplementation in a number of neurodevelopmental disorders. Anecdotally children with verbal apraxia will often demonstrate leaps in their speech production when taking high-quality fish oil. The addition of vitamin E to omega 3 fatty acid supplementation in this cohort of children induced benefits that exceeded those expected from just speech therapy alone, according to parental report.

“While data from a case series is by no means conclusive, the results clearly point to the need for further attention to this poorly understood disorder, and a placebo-controlled study to investigate the potential role of vitamin E and omega 3 supplementation in this group of children,” says Dr. Morris.

She points out that it is equally important for children given an apraxia diagnosis to receive a more comprehensive metabolic evaluation than what is current practice. Many of the nutritional deficiencies like low carnitine, zinc and vitamin D are easily treated. By not addressing the nutritional deficiencies, the child will continue to suffer from significant medical consequences of those deficiencies. The first step is to identify and treat the deficiencies. The next step is to try to figure out why they have these deficiencies and a fat malabsorption syndrome in the first place. However, Dr. Morris does advise families to work closely with a physician rather than trying promising but unproven interventions on their own.

In the mean time, however, Dr. Morris’s study provides the essential foundation for identifying the children who may need these treatments.

“By identifying these early red flags of the syndrome, we’ve provided a way to get these kids treatment at the earliest possible moment. While 75 percent of the time kids identified as late bloomers really are just that, 25 percent of the time there is a true pathologic condition. To miss it is to miss critically valuable time for early intervention. If a child has all these symptoms, chances are they are going to fall into the 25 percent who have a condition that needs further evaluation and treatment.”

About Children’s Hospital & Research Center Oakland Children’s Hospital & Research Center Oakland is Northern California’s only freestanding and independent children’s hospital. Children’s is the leader in many pediatric specialties including neonatology, cardiology, neurosurgery and intensive care. The hospital is a designated Level 1 pediatric trauma center and has the largest pediatric critical care facility in the region. Children’s Hospital has 190 licensed beds, 201 hospital-based physicians in 30 specialties, more than 2,611 employees and an operating budget of $312 million. Children’s research arm, Children’s Hospital Oakland Research Institute, is internationally renowned in bridging state of the art basic science and clinical research for the treatment and prevention of human disease. With about 300 staff members and an annual budget of approximately $50 million, CHORI is ranked among the top ten research institutes in National Institutes of Health funding to children’s hospitals. CHORI is a leader in translational research, providing cures for diseases, developing new vaccines for infectious diseases and discovering new treatment protocols for previously fatal or debilitating conditions such as cancer, sickle cell disease and thalassemia, diabetes, asthma, HIV/AIDS, pediatric obesity, nutritional deficiencies, birth defects, hemophilia and cystic fibrosis.

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I have heard of these nutritional and supplemental programs being used for Autistic children. I have always wondered if something like this could help Luke, especially with the past seizures. This totally makes a lot of sense. I am going to call the doctor today. We have to keep searching for answers!

Love this game. Sorting by color. Sorting by animal type. Which ones are little, which are big?? Mommy and baby. Making animal sounds. Luke’s therapist has used this game for 20 years. You can find similar manipulative’s at Lakeshore learning store.

Making home made flash cards is a fun easy way to help your child learn to say words that are relevant in their life! So much of learning process with Apraxia is visual cues. We use the Kaufman cards along with our home made cards. What we did is just go around taking pictures of everything that Luke uses and finds important in his daily life. Everything from his bed, bath tub, toothbrush, shoes, socks, juice, milk, pets, siblings, books, toys, anything that he would desire to say. Then I took the cards to Luke’s speech therapist and had her break down the words to their simplest form. She broke the words down from basic all the way up to two word phrases.  They are very helpful.

Just an idea……..