House of Krause

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.

Miss Megan and Luke

Lucid Speech and Language is expanding. Yeah! They will have a second Corona  location beginning February, 2010.  This is going to be half the drive for us. Megan has a wonderful SLP who is also bilingual doing therapy there. What I love about speech at Lucid is the creative ways Luke’s therapist gets words out of him.  She always encourages cognitive thinking in her activities simultaneously with the speech work.  It’s always something new and exciting. Lucid is truly a place of growth and encouragement for children (and parents). If you are in the area or may even have to drive or fly for that matter, it is worth it. If you are looking for an evaluation I feel confident parent to parent to say you will get an accurate diagnosis.  here. All of the SLPs are trained and have many methods of working with Childhood  Apraxia of Speech!

P.S. Did I mention Megan McCann also conducts research and lectures on Childhood Apraxia of Speech. I am so thrilled Luke has been able to be a part of her awesome work!

It has been a delight for our family.

"Look what I made!" (Did I mention S's are hard?? Snowman, Santa, Snowflake!)

I would love to hear from you if you are or know of a good speech pathologist/Center who specialize in Childhood Apraxia of Speech. It would be great to have more resources for people in different areas. I would love to use this blog to connect people so children can get help! I also think it would be wonderful to have a story page on the blog. If you feel you would like to contribute a thought or a story, I would love to dedicate a place where you can post it and share.

Blessings at Christmas Time-

I don’t do, “Flashback Fridays.” Nor do I do, “Not me Mondays.” No,”Wordless Wednesdays (they’re hardly ever wordless??).” Guess it’s just not my blogger style but it’s Friday and here is one of my most memorable Christmas pictures- Flashback before Lily got glasses and discovered she hadn’t been completely seeing the world. When Preston still thought it was really cool to dress up like Joseph for Mom’s Christmas cards. And when Luke was just a  brand new little miracle who floated down and landed right in the middle of us all.

Luke 2: 8-14

And there were in the same country shepherds abiding in the field, keeping watch over their flock by night.

And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were so afraid.

And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.

For unto you is born this day in the city of David a Saviour, which is Christ the Lord.

And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger.

And suddenly there was with the angel a multitude of the heavenly host praising God, and saying,

Glory to God in the highest, and on earth peace, good will toward men.

Please say a prayer for a very special little friend of this blog who is getting a new set of tubes and his adenoids taken out on Thursday.  I’m praying the surgery will go smoothly and the recovery will be quick so he and his family can get back to enjoying the holidays.  I am saying an extra prayer this surgery will help this little man hear better than ever, and it will allow his speech continue to grow and flourish! Thanks Everyone!

I know I’ve talked before about the times we’ve been given papers full of words. Always the same thing, circle the words your child says spontaneously. It always killed me to hand the paper back and say, “NONE, he can’t say any.”  I know I wasn’t supposed to take a picture of this (copy right infringement, I think) but I couldn’t help myself. And I am sorry for being down about this situation lately because really when I step back and take a look at how things are going there is only one word that comes to mind,

WONDERFUL!

Look at all the wonderful words! And guess what else happened? Luke came home from school and told me, “My name LUKE!”

L’s by nature are hard, well so are F’s, S’s, R’s, and Z’s but we can talk about that later.

This is the first time he has been able to say his own name.  This is so exciting. This means when someone says “What’s your name?” he can confidently respond, “LUKE!” This means when he makes a new friend at school he can say, “Hi, I’m LUKE!”

This is big. This is a huge milestone. This is

WONDERFUL!

Lily came up with a great way to play Candy Land, USE REAL CANDY! Luke really enjoyed getting a little piece of candy as he passed through each land.  He was definitely attentive to see this game through!

http://www.clickondetroit.com/video/21682168/

Check out this video. It is wonderful to see the great work Nancy Kaufman is doing. If you want more information on the Kaufman Center, I do have her listed under my links.

Thanks Jacqui.

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.

road. A long hard road. It’s steep and full of bends. Most of the time I can’t see what’s around the corner.

And a lot of times it feels like this…

or this…

The seasons change and I’m still on this road.

Wish there was a sign to let me know how long this road will be.

Eight miles would be fine.

Will I make it up this hill? What will I find on the other side?

Then I stop…

and realize I always end up back on the same street.

And then I realize that road always leads me to the same place…

HOME!