House of Krause

It’s hard to describe the pain that I am feeling. It’s like a nightmare. Everyday I wake up and think it was just a bad dream, only to realize the pain and anguish is still there. After last weeks tests we got word from the doctor. My mother has stage four lung cancer. The cancer has now taken over her entire right lung and has spread to the center of her chest (sternum), now it is infiltrating her left lung.  It has spread to her pelvis and possibly her bones. She is having a bone scan done today. Her illness is incurable. She has decided to still undergo chemotherapy to hopefully reduce her coughing and allow her to breathe easier. She has also volunteered at the City of Hope for an experimental treatment.

Seems these days there are ribbons for everything.  They come in every possible color. Honestly, it is impossible for them to have much meaning to you until they pin one on you. They give you your color and then you know this is what you are facing. This is the road you will travel on. This is the ribbon for your mother’s cancer.  Lung cancer is pearl. So fitting for a women who is the self proclaimed Queen! The feeling is so overwhelming. It is a feeling that hits you so hard, it feels as though your legs will collapse right under you and your body will drop to the floor.

As always my mom remains a great source of strength to me. Amazing when she is the one who is sick. She is certain that God has a perfect plan in mind for her life. She puts all of her trust and complete faith in Him.  Despite her weakness she remains so strong!

I think back to all the hours my mom and I spent driving Luke to speech therapy. Sometimes we talked ourselves silly. I complained about the long drive. I find myself wishing the drive had been longer. I find myself lingering in moments. I find myself rushing for nothing. I find myself hugging longer and holding tighter. At the same time I find myself angry. I find myself distant. I find nothing to be funny.  I find myself questioning everything and unable to come up with a single answer.  I find myself wondering how I will ever be able to deal with this. I once again find myself in a place I have never been before.  Again I am asking God, Why here??

It’s been the worst week of my life. Please pray for my mama. We just found out she has lung cancer. She is so very sick and in the hospital.  I doubt I will be on my blog for a while. I hope I will be able write again and continue to share soon. For now I am asking for prayers. I hope you will take time to call someone you love and tell them how much they mean to you. This all happened so fast. I am so close to my mom. She is my best friend. She is the best mom anyone could ever ask for. I have been so blessed. Thank you my friends!

Love,

Jen

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.

“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

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Last night my cousin and I walked through a thrift store.  It was late and the girls at the counter told us, “Three minutes, stores closing!”  We had a quick look around. Yes there was plenty of STUFF. Old curling irons, stuffed animals, vases, my cousin even saw a cross that she said looked exactly like the one she had put in her fathers casket when he died. I was just kind of wondering around. I walked by the shoes and noticed a pair of  beautiful hand painted wooden shoes from Holland. They stopped me in my tracks for a minute because I remembered this story. A friend of mine sent it to me about a year ago.  We were both beginning our journey to some where we had never been before.  I left the wooden shoes on the shelf but thought about them all night long.  I thought about the shoes, I thought about the people. I thought about the people that were on their way to Holland long before we ever arrived.  The people who traveled there on purpose, so when a blond little three year old boy and his scarred family got off the plane, they would be there with open arms and a map. They didn’t know our names but they were sure we would be coming.  I thought about my friend, she was on the same plane, but we wouldn’t find each other until we both arrived. I thought about the dear people that paid for our hotel room and gave us the hope that maybe someday we would make it home.

I had to go back this morning and buy those little wooden shoes from Holland. I had to buy them because I never want to forget this journey.  We can see things and meet people in life that inspire us and warm our hearts but if we don’t allow them to really change us, then it’s all in vain. I think “Welcome to Holland” speaks to people across the board whether you have a child with special needs or you are facing other challenges in life. We all have a plane to catch. We all end up in places we never dreamed of going.

Luke and I took the little wooden shoes up to the counter. They lady said, “Hmmm, little wooden shoes?” and I said, “Yes please, little wooden shoes for me!”

Jeremiah 29:11

It’s been raining, and raining , and raining. Time to pull out my moms old home made play dough recipe. The kids love making it. They pick their own colors, and enjoy being a part of the whole process. Here is a very simple recipe for home made play dough;

1 Cup flour

1/2 Cup salt

2 Tsp. cream of tartar

ADD

1 Cup water

1 Tbsp. vegetable oil

Few drops of food coloring

Cook for 3 minutes in a sauce pan -Stirring constantly.

Easy as that. Throw it all together. Makes really great play dough!

Here’s one more easy peasy recipe for yummy banana bread;

2-3 Bananas

1 Cup Sugar

1/4 Cup of butter or margarine

1 Egg

1 Tsp. baking soda

1 Pinch Salt

1 3/4 Cup Flour

1 Tsp. vanilla

Mix all dry ingredients together first, add remaining.

Bake in loaf pan, 350*- Approximately 1 hour.

Unfortunately no, just another bed destroyed by Miss Penny. Some one help! When will the destruction end?

again. One of my most frequently searched posts was about home made flash cards. Very simple to do. Our home made flashcards are just snapped pictures of things in Luke’s world. Visuals of items can be very effective for learning words. I had Luke’s speech therapist breakdown the words in the most minimal way on up to two word phrases. Here’s more on homemade flashcards and ways to break words down.

I know, gross a flashcard of our toilet. But this is an important word for a toddler who needs to be able to communicate, I have to go potty!

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.

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 know it’s a lot of blogging about Luke but frankly my older kids are computer savvy and on to this blog. They realize when I put silly stories about them and pictures a lot of friends and family are going to see it. They usually don’t let me publish posts about them (so I keep them to myself). But Luke, he’s not on to me, YET!

Luke had the best time last night. Well, I think we all did. I drove home with a warm feeling in my heart. This whole thing  has come so full circle. It just amazes me. Looking back at this past year when I reflect on Luke I think of one word, WORK! He’s worked so hard and accomplished so much. He just had the time of his life last night when we all drove down to speech together. The whole family. Not only were we all with him but when we got there he didn’t have to do any speech WORK! Megan, her family, and their entire staff were there to welcome Three Little Words foundation. This foundation is trying to help cover the cost for children who need one on one speech therapy. An amazing undertaking.  Luke was invited to come because happily we may get to share his story.  He may be their little spokes man.

Any how when we got there,  I could tell he thought Wow, this is a party! Everyone was there. All the doors were open. He was free to roam around. Walking in and out of the receptionist space.  The other therapist office doors were open,  he was eying all their toys.

We were eating dinner on the waiting room table were we usually play quietly waiting for our turn.  I’m standing talking to my husband when I realize Luke’s MIA. I round the bend to Megan’s room and there he is. Standing up on Megan’s table pulling down everything he ever wanted. While having to do absolutely no work for it.

Oh Happy Day!

He was even having a good taste of the pretend ice cream he always wanted to try.

I was cracking up. I’m not sure how happy he’ll be next time we have to actually do therapy.

Then it was time for pictures with Megan. Things could not have gone better.  Just to sit back and watch the interaction between the two of them was a special moment for me.  To realize my sons story will hopefully help children who really need speech therapy and cannot afford it. To watch Gods plan in this unfold.

I had to click a few pictures along with their photographer. He must have got some awesome shots. His camera was clicking a hundred times for every shot I took with Preston’s little camera.

Some gifts you can’t explain. Some gifts are given so freely. Some gifts last for a lifetime.