House of Krause

It’s like I’ve been in a dream, in a fog. It’s been intense. It’s not lifting hardly at all. When you love some one and you lose them, it’s just something you can’t get over. I know a lot of people think, well it’s your mom, you knew she wasn’t going to live forever, but I thought she was! It’s like I’m going crazy. I think, well I’ll go on a trip and I’ll get a sign, I’ll find her. I just want to know she is O.k. I have always had faith but I have to admit, I’m shaken. I look to the sea, I look to the sky, to the mountains, I can’t find her. I’m heart broken!

I suppose the fog must be lifting a little. Lately I’ve been looking around and realizing just how quickly time is passing. I want it to just slow down, stay on my side for a little while. My girl, she’s growing like a weed…

Pres is just on the brink of a whole lot of things. Nearly pre-teen,  what happened? He’s discovering lot’s about life right now.

Soon little crabs and star fish won’t be in his beach priorities.

And when the heck did the dog learn to drive the RV?

Campground squirrels are now using shovels, Where have I been?

I always end up full circle.

If you want to get in the water sometimes you might have to climb through this…

If you want to learn how to surf you might look like this…

I can’t miss these moments, I know she wouldn’t want me to…

Hope your summer is rolling in long waves, and you are surrounded by the people who bring you the sunshine!

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!

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

I find my self a bit confused. I started blogging to relate and talk to other people about their childrens struggles with Apraxia.  It started as a way to express my feelings, get out my emotions, tell our story and try to help other people. Now I am stumped because I wonder just how honest I can be. I do not blog to put on a show. Can I continue to pour out my emotions about how this feels? Right now it does not feel so good. I don’t feel so positive. I feel sad. Sad because I can not fix this for my son. It breaks my heart into a million pieces to watch him studder and grope for words when he’s really worked up about something. It feels terrible to hold him in my arms while he melts  because he understands every word I am saying but I have no idea what he is saying back(and he knows it). Things the average three year old does not even give a second thought about. Wonderful carefree words just slide out of the mouth. For Luke and other children with Apraxia this is the greatest struggle. How frustrating this must feel. I see some changes happening with Luke. I know it is not him, it is his struggle that is changing him. It’s much easier to just tell a friendly face “GO!” then to explain how school was. It’s easier to just scream “NO!” then to tell your sister you want her to please stop because she’s bothering you. I have spent the day replaying in my mind, the little quivering voice who told me last night, ” I talk, but I no talk.” Luke feels no pressure with me, most everyone else equals PRESSURE! Questions require an answer. Answers are hard to come up with. This is a tricky fight.  Luke has really come  a long way, no doubt about that. But there are still those days and those times that are really rough. He is getting older now, he is understanding so much more. We have a long road ahead of us. I guess  sometimes I just want to take off the gloves and get out of the fight.

If there is one thing I’ve learned in the past year, it is to think like an occupational therapist at every opportunity! There are so many activities you can do right in your own home.  In three days I will be left to my own creativity in regards to Luke’s O.T and play therapy time. I am excited to continue to work with him and have enlisted the help of my sister who is a teacher. I want to share some easy ideas I have learned this past year watching Luke’s wonderful therapists.

We do this activity utilizing the stairs. Luke thinks it’s just fun stuff. His task is to reach down low and grab the blocks, then reach up high and stack them on the stairs. But there’s a catch. See that black disk below his feet. It’s a balancing disk. It has a red ball in the middle that makes it a little more tricky.

Usually after he stacks them all on the stairs, he goes up the stairs to retrieve them. We also use the stairs for many things. Like working on that jumping. Just from the bottom step to the floor (no crazy super man stuff). And of course we are always right there with him.There was a time when we would just practice stairs while holding hands just for balance and coordination. Standing on this balancing disk uses tons of muscles.  I think a couple of pillows under his feet might work well also.

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.

This is the first time in a year and a half of therapy Luke has ever cried over a toy. When it was time for his therapist to go he had a melt down. He just kept saying, “Lady Bug, Lady Bug!” I guess they were pretty cool.  Each bug came in three parts. They snapped together. They each had a number and an equal number of dots on their back.They were challenging to pull apart. You could stack them up. Good for counting and motor skills. Luke enjoyed thinking out side the box and creating wild mixed up bugs, then he would pull them all apart and match them by color again. His therapist said this was very good. He was challenging himself and thinking for himself. I think I’m going to have to buy him a set of these. They are made by learning resources.  I was just visiting their website. Wow, they have a lot of really cool stuff. www.learningresources.com

Snap and learn number bugs

So here’s an easy fine motor activity. It only requires pipe cleaners and straws. Luke made Lily some bracelets while she was gone to school. I helped him cut up the straws and he threaded the bits of straws on to the pipe cleaners. He was really excited to give her the bracelets when she got home.

One year ago today was Luke’s first trip to speech therapy. I remember crying painful tears all the way home. So many thoughts went through my head. How would our family get through this? How would I make this drive? Will my son ever talk? What went wrong this time around? If only I had been more assertive at Luke’s birth. I told everyone I didn’t blame myself, but I did. Did I take for granted my pregnancy? What if he never talks? Will Luke use sign language for the rest of his life? Why did this happen? Was God mad at me? Is this for all those times I turned my back and did what ever I wanted? How does the story end? How does the story end? How does the story end?

Today I am celebrating my birthday with tears in my eyes, but they are not stinging. They come with joy. Luke has come a very long way in the past year but it is so much more than that. There are things in life you can never explain unless you walk through it. There are lessons God allows us to experience. I feel privileged. Yes, privileged that God has put this in my lap. It has molded me and refined me. I see things very differently today than I did a year ago.  God is not a punisher, He is a deliverer! He does not turn His back on us, He holds us! He is not a destroyer, He sustains, refines, and replenishes us! He whispers, I love you Jen no matter what.

Do I know how the story ends? No. Do I care? Not really. Do I know how well my son will ever speak? No but God has a perfect plan. Have I let go of trying to be in control? Yes, because I know I never will be. Have I learned how to Love?  Yes, because He first loved me. Have I learned how to live for today? Yes, tomorrow may never come.

All I wanted for my birthday was to finish this project I’ve been working on.  And guess what? I did it. I hope this will help other parents searching for answers.  Apraxia was a word I had never heard of in my life.

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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.