House of Krause

These are great little speech toys. If you ever watch Nancy Kaufman work, she likes the wind ups.  We started our collection when we started speech. Practice words, get fun little rewards. When I attended the Nancy Kaufman Apraxia conference she talked about finding your child’s to-die-for items. Finding things that really motivate them. Favorites. When we first started speech it would break my heart that Luke would have to work for the toys he wanted to play with. Really though they quickly learn what they have to try to get what they want.

♥ 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.

Last night I had the joy of hearing Luke sing for the very first time. It was the perfect end to a wonderful day! He sang very slowly “Oh, Happy Day, Happy Day, Happy Day…” over and over again. Lily and I joined in. He was beaming from ear to ear. He was proud of himself.  I have to be honest, I’ve been feeling frustrated. Sometimes it’s hard to see progress when you are on the inside looking out. There are nights when I am so tired of talking, repeating ,working and interpreting. I stay strong so I can push him through those times when he is desperately trying to tell us something we just can’t understand. I’ve learned to handle Luke’s meltdowns in a very matter of fact way.  Of course we go through the methods of trying to figure out what he’s saying. But simply sometimes we can’t. I’m honest with him and say,  I don’t understand you right now. But I will not let you give up, I will understand you soon. Never could I have imagined how one little word, Apraxia, would change my life. It’s made me stronger in so many ways.  Watching Luke work hard everyday has inspired me in such a profound way. I cannot honestly tell my children they can accomplish anything they want to in life, if I don’t  believe that for myself! I think for the first time God has shown my how to believe in myself.

A gift He’s given me through my children. We had the best day at the L.A Arboretum

Luke by a huge art sculpture made only with twigs

It gave us all a chance to breathe. Just the best place I’ve been to in a really long time

Beautiful peacocks everywhere

Luke got scared. The peacocks sounded more like prehistoric dinosaurs

Lily enjoyed a pond full of “Lily pads”

God wooed me with His endless creativity. Who knew He created so many varieties of bamboo

Preston picked up another hat to add to his collection

Later he was so sweet and wanted to give it to me for my gardening

Thanks Pres, I’ll buy you one next time so we can wear them in the garden together.

The L.a Arboretum was only twelve dollars for all four of us to get in. It was the best 12$ I have spent. So much better than standing in lines at Disneyland or any of that. If you are in the area spend the day there.  127 acres to explore. You can purchase exotic plants at the gift shop. They give you literature about planting and gardening in So. California. I was so excited to learn we live in a climate that makes it possible to have vegetables almost all year round. Very beautiful place, Hope you get a chance to visit!

I was very excited when I came back from a bike ride to find Dad helping Lily with her home work, and Luke with his. This is my favorite oral motor toy. A green crocodile that has big yellow eyes. You blow and the eyes pop out. Luke loves this one. O.K. So I know it was kind’a dirty to be doing oral motor toys on the drive way. But what can I say. Sometimes things like this happen when my husband is left with the kids. I’m a firm believer in dirt anyhow, so what the heck!

Among other things, we have train whistles, kazoos, vibrating star, teething ring, bumpy rings that are really great for dipping in sour stuff. Pucker -up!

Ready, set, blow!

Meeee!

Labels are just labels. Why does it matter if it’s called speech delay or Apraxia? Top two reasons. Number one, getting your child in the right type of speech therapy is crucial.  Speech therapy for Apraxia is different.  Think of it as “training your brain”. It involves visual cues and prompting over and over again. Some one once told me with Apraxia you might have to repeat a word a hundred times to get your child to say it once. I think it’s more like a thousand! Seeking treatment with a therapist that is not familiar with speech Apraxia is a bad choice. Why take the side streets, when you can jump on the freeway! I’m sure there are techniques that  work for a child with Apraxia, but there is one method that is tried and proven -The Kaufman speech praxis treatment approach.(Nancy Kaufman)

The Kaufman speech praxis treatment approach helps the child produce words with their best approximations through shaping, cueing, fading, and reinforcement techniques, employing the principles of operant conditioning/shaping (Skinner, 1959)-there’s that brain training. True Apraxia does not go away, it is life long. If left untreated it will not resolve on it’s own.

And number two, so you can be reassured you are not losing your mind! It can be very confusing and frustrating journey to discovering Apraxia in your child.  We were told speech delay (he will talk when he’s ready) several times.  I would just leave appointments scratching my head because that just didn’t add up.  It left to many questions unanswered.   We thought maybe Luke was Autistic, some parts fit, but then still that didn’t really add up either. We finally heard the word Apraxia from a wonderful Occupational therapist. She went back and reviewed with us Luke’s language from the very beginning.  After researching and learning about it, all the pieces  fit. It finally made sense!

Click here- speech delay vs. Apraxia??

Everyone warned me not to see Marley and me.  We were going to take the kids at Christmas time but my Mom called and said “Please don’t go. It’s just too sad, at the end your 65 year old father was even blubbering and crying his eyes out!” They all knew how I felt about the greatest dog in my life- Daisy, yep a yellow lab! Well, Preston and Lily started a read-a-thon at school. They told me the parents were allowed to compete also. I got a crazy competitive streak to read the most of any parents (like I have the time with 3 kids and all Luke’s appointments to sit around and read all day). But anyhow, I decided to read Marley and me. Really how sad could it be? I already knew what happens in the end, it happens to all old dogs.  I could handle reading it by now. I cruised through the book racking up the minutes all along for the read-a-thon, which my kids tell me I’m not even close to being top parent reader, oh darn! So last night I get to the last three chapters.  I should have just gone to the movie! Reading it was even worse. I could only get through one paragraph at a time, then I would be crying so hard that I couldn’t see the book.  My snot was flying all over the pages. I would stop and get tissues only to get through one more paragraph. The kids were playing superheroes at the time and driving off the couch in our bedroom, I was completely oblivious.  Lily noticed I was a mess so she came over to comfort me. How silly I felt.  I was laughing and crying at the same time as we watched Luke jump off the couch into a pile of pillows, and then roll a couple times in sheer delight! I’m now convinced, I should have just gone to the movie, and least I could have just did all my crying at once, while the film still rolled. This one paragraph at a time nearly killed me! All the characteristics of the Marley dog were so much like my old girl Daisy!  Well anyhow what does this have to do with Apraxia?? I ran into the most wonderful programs! They are now training service dogs for children with special needs. Service dogs are no longer just for the blind. These are dogs that service children with Autism, seizures, hearing problems, ADHD, Downs syndrome, fetal alcohol syndrome, and Yes even listed Apraxia. Dogs provide a way of bridging gaps for children when they go into new situations. Other kids may not be able to understand an Apraxic child but everyone can understand the language of a dog! These dogs stay close to the Autistic child that may be prone to wandering off. Able to alert the parents! Some dogs may even gain the instinct to warn parents of an upcoming seizure in an epileptic child. I think this is just so awesome! Check out Man’s best friend.  And if your a dog lover like me don’t read the book, just see the movie!

http://www.4pawsforability.org/assistancedogs.html

Luke's excitement, shortly before he got knocked to the ground and licked to death!

Yesterday I was able to spend some time on the internet surfing around. I wanted to see what the buzz on the web was concerning Apraxia. How were other mom’s coping, what could I do to help? I was able to find plenty of other parents blogging about their Apraxic children. Mostly heartwarming, seeing little faces knowing they are going through the same thing Luke is- people trying to help other people! People looking for answers. But I came across one mom that blew me out of the water, and I’m hoping not to many other parents come across her blog. Unfortunately, if I found her, so will others. She wrote a letter addressed to Parents of Apraxic children. I have to admit she did forewarn that she is a no nonsense person, she says it like it is. I could of stopped there but of course it only drove my curiosity further. She had plenty to say, but the just of it was something like this; Plan on selling most of what you own to pay for your child’s therapy, plan on shopping at the thrift stores because you will no longer be able to afford new, plan on moving most likely far to find a therapist, Give up the notion that your child will ever go to public school, expect other problems to manifest, plan that 10 years from now you will still be hard at work. She said, everyday, every moment that goes by is just another day wasted, another day that your child’s peers will be farther and farther ahead. She went on and on and I get it, I GET IT! I know what she was saying and yes I was once again hit with the reality of what we are facing. BUT,  wait a minute, these children have to be given a childhood too! It cannot always be about the work, the therapy, and the treatment. Every Child does deserve a voice but we can only do our best! I would never compare Luke to his peers, his peers don’t have a serious neurological speech disorder.  I try not to compare any of my children to their peers because I can only expect them to do their personal best. His peers have already left him in the dust, why would I spend a second trying to hurry him to catch up!  Luke may never  catch up. And here’s another big BUT, I sat at the Nancy Kaufman conference and watched video after video of children with all kinds of different disorders learn to talk. I saw footage of a young boy with Apraxia who grew up to attend University and speak 3 different languages! He ended up with a degree in communications. So I don’t mean to go off on this women of the web, but I don’t ever want anyone who stumbles across my blog to think there is no hope. There is always hope! I’ve seen it with my own eyes! And if there happens to be a day here or there that I don’t work on flash cards and speech home work with Luke,  I don’t consider that a day wasted because there is other languages that I want to teach my son, the first and most important one is LOVE!

I want to leave you with a beautiful poem, I have read it over and over, and it touches my heart every time!

Just for this day.

Just for this morning, I am going to smile whenever I see your face.
and laugh when I feel like crying.

Just for this morning, I will let you wake up softly, all rumpled in your
flannel and I will hold you until you are ready.

Just for this morning, I will let you choose what you want to wear, and
smile and say you’re beautiful.

Just for this morning, I am going to step over the laundry, and pick you
up and take you to the park to play.

Just for this morning, I am going to eat a huge breakfast , with bacon
eggs, toast and waffles, and you don’t have to eat any.

Just for this morning, I will leave the dishes in the sink, and let you
teach me how to put that 100 piece puzzle together.

Just for this afternoon, I will unplug the telephone and keep the
computer off, and sit with you in the garden blowing bubbles.

Just for this afternoon, I will not yell once, not even a tiny grumble
when you scream and whine for the ice cream truck, and I will buy you one if he comes by.

Just for this afternoon, I won’t worry about what you are going to be
when you grow up or who you might have been before your diagnosis.

Just for this afternoon, I will let you help me bake cookies, and I won’t
stand over you trying to ‘fix’ things.

Just for this afternoon, I will let you put all kinds of barettes in my
hair, and put lipstick on my face, and I will tell you how pretty you have made me look.

Just for this afternoon I will take you to McDonalds and buy us both a
Happy meal so you can have both toys.

Just for this evening, I will hold you in my arms and tell you a story
about how you were born, and how much we love you.

Just for this evening, I will let you splash in the bathtub and not get
angry when you throw water over your sister’s head.

Just for this evening, I will let you stay up late while we sit on the
porch swing and count all the stars.

Just for this evening, I will bring you glasses of water, and snuggle
beside you for three hours and miss my favorite show on t.v.

Just for this evening, When I kneel down to pray, I will simply be
grateful for all that I have and not ask for anything, except

just one more day.

(copyright Sally Meyer.  No portion of this poem may be reproduced in any form without permission of the author. e-mail:rainmom2000@aol.com)

Thank you for allowing me to post this Sally!

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 ll’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 have been asking 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-ta, 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.