House of Krause

I never allow comments on Luke’s You-Tube videos.  In the past I have received some of the most random and  occasionally just down right rude comments. I try to guard my son against things like that. Of course he didn’t decide to show the world his struggles with Apraxia, I did. I have second guessed my decision several times but in the end I like to think I am raising children who want to make a difference in the world.  I like to think if Luke ever questioned me about it, I could say, “You gave people hope, you showed other families what is possible!” And I like to think that would settle his thoughts. I hope I’m right.

Yesterday I was doing some random searching on Apraxia videos. I haven’t checked in on my posted videos in a long time. I was so surprised to see Luke’s very first therapy video has received over 12,000 hits. I think people are drawn to it because he looks so young. He WAS young, just barley two. A lot of people sent me responses wondering how he could even begin therapy at such a young age.  I ran across another little guy, Owen! Owen’s mom posted a video of Owen at 33 months, after six months of taking fish oil. I remember Owen. This was the video I found and watched nearly two years ago when I was searching for answers myself! This little guy is so cute. It was wonderful to see him talking and answering questions independently.  I scrolled down and started reading the comments. I chuckled as I read this one,

“Are you sure he has verbal apraxia? Cause he not even 3, and he bright!! (and really cute too.”

I loved Owen’s moms quick response,

“Yes, I am sure. He was diagnosed by a speech clinician. Many children with verbal apraxia are very bright and very cute ;-)”

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That just reminded me and reassured me of what a great idea it is to keep You-Tube comments in the off position….

CUTE? YES!

After a day at the beach Luke says, “I want to jump in a sleeping bag and go swimming!” I said, “Luke, that doesn’t sound like such a good idea.” He says, ” Yes it is, that way sharks can’t get me!”

CLEVER? For sure!

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.

This question seems to come up from time to time. I’ve certainly questioned if this is a possibility myself.  Oh, wouldn’t it be great if tomorrow this was suddenly resolved. Unfortunately, this is not the case. True Apraxia of speech is lifelong and does not disappear on it’s own. The good news is with appropriate help and treatment most children with CAS can learn to speak clearly.

When Luke was initially diagnosed some one explained things to me in a way that really made a lot of sense.  They said to think of the brain as a spider web, connections running in all different directions. If one part of the web is broken or disconnected, there is usually another pathway that can be used to get to the same place. It may take longer. It will take help, but you can get there.  That was a great way for me to visualize the situation. It still really bothered me though to think that forever Luke will have to think about that secondary pathway to speak.  This was inaccurate thinking on my part because if Luke learns to speak using a secondary pathway, isn’t that a first pathway for him?  He would never know any difference.  Does this make any sense? Anyhow, I’ve been doing some research on the toddler brain, it is an AMAZING thing. I have a better understanding of why early intervention is so important.

Seventy-five percent of the total brain growth occurs between one to three years. By the age of three, a toddler’s brain has formed about 1,000 trillion (not a million or even a billion, a TRILLION) pathways or synapses ­ about twice as many as we have. The toddler’s brain is super dense and primed for learning. When a pathway is used repeatedly, it becomes permanent; a pathway used infrequently is lost. This goes along with the old saying, use it or lose it! This is actually true.

You can see in this picture the density at age seven compared to age fifteen. At fifteen many connections have already  diminished. Of course we can continue to learn throughout life. It is just not as easy as in those early formidable years. Especially when it comes to speaking. It is very difficult to correct patterns that have been set in and repeated year after year.

Some people thought I was over reacting when Luke was very young and I was really starting to worry and question things. Even the doctor brushed me off.  I am so glad I moved ahead with my intuition. He is now a year and a half into therapy and still has a long way to go. When I look at some of his early videos I think, my gosh, he’s just a baby! And he was. This has given him the greatest chance of success with language. If you think something is wrong what do you have to lose by pursuing evaluations and seeking help?

About this time a year ago I attended the most valuable seminar in regards to Apraxia. Nancy Kaufman has been treating children with CAS for over 25 years. The seminar is designed for speech therapist but is also open to parents. Her methods are the reason my son has a voice today.  Nancy Kaufman is once again lecturing through out the country. If  you have the opportunity to attend her workshop you will have a wealth of practical ways to really help your child! I’m encouraging you to GO, GO, GO! LOCATIONS

Our Speech Homework

Now it’s time to add back in some of those little words that children with Apraxia usually leave out.

We made this collage to practice over and over with.

She is cooking.

He is swinging.

She is sleeping.

She is eating.

He is painting.

(They are also very interested in it because they helped to make it.)

One of my sweet friends Jacqui (I actually met through this blog) were talking about what Luke’s language looks like at this point. How is he at home?? This is a little excerpt from that conversation.

Luke is saying a lot of words but now comes the hard part, connecting them on his own. This is very hard. Right now impossible. It seems he is making an attempt at almost anything I say to him. He can connect two to three word little combos on his own. But much after that is me scripting each sentence for him one word at a time. Some words are very clear, some are not. Some little things he is catching on that people say around here. Like today it was, “Oh my gosh” Luke hears big brother say it then he repeats it. It is like having a one year old maybe one and a half (language wise) in the house. The kids go Luke say this, say that, and try to teach him things to say, sometimes naughty. That stage when kids will just say whatever they are told to say and everyone thinks it’s cute even if it’s a bad word. It is still so hard!!! I feel very bad for him because he has so much on his mind and I just can’t wait for him to be able to express himself. Some times two word phrases are not enough. I can never really hear the whole story. Just one little word to describe the hundreds he is thinking about. I see it in his eyes sometimes. It breaks my heart. But one day at a time my friend, that is all we can do. I am trying my best. I will script all day and all night for him, he’ll get it.

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.

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……..

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!

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!