House of Krause

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 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.

Luke was given this book for his birthday, My Little Red Toolbox. Oh my, it is the coolest book ever! From the outside it looks like maybe a fancy pop up book. However when you open it up, it’s full of surprises!

This book is all hands on and so creative!

So I talked to this person, called that person. Met with this SLP and that one. Looked at this program, then went back to that program. Made a ton of phone calls. Held people off. Worried, questioned, debated in my mind. Thought I had it all figured out, only to wake up and change my mind again. Called more people. Talked to friends. Worried some more. Cried. Thought this is all happening to soon. Got angry because after all it’s just not fair. I wanted Luke to go the same school route my other children went. Finally came to the conclusion, I HAVE TO LET HIM GO, he needs all the help he can get!  So I signed my name on the line (IEP) and Luke is off to preschool.

Thoughts were racing through my mind. What if no one understands him? What if he can’t express himself when he is upset and scared? Did I make the right choice? Will he be able to come home and tell me about the things he did while he was gone?

We found a small Thomas back pack. I filled it with a snack and hid Mickey Mouse inside. I told Luke Mickey was going to sneak into school with him so he could learn too!  We talked about lots of things. Daddy managed to get the morning off from his new job and off we went. We got to walk him into class and stay for a few minutes, then it was time to leave. Luke was upset. He cried a little bit. I held strong because I knew in my heart this is the best thing for him.

I returned a few hours later to see my little star leading the line with a fireman’s hat on. He peaked around his teacher and saw me standing there. He waved and his face lit up.  He said bye to his teacher and new friends. Told the teacher he would be back.  Then he proceeded to talk non-stop for the next two hours. In his own way he told me about everything that happened. Fireman came to school, showed kids his clothes, had cheese and crackers and apple juice, played on the toys, went pee-pee in a little toilet, made crafts.  My heart was so full. I have never seen him more animated and excited (and so talkative!). He wanted to get his brother and sister right away so he could tell them about his day. Once again I sit here amazed.  Luke is not limited by his speech problems. This is who he is and he is not afraid.  I’m looking at the mountains, he sees little hills.

You shine like a star my little friend. You bless my life in ways you’ll never understand. You show me we are only limited by ourselves.  You are AMAZING!

I’m no Molly home maker but every once in a while I try. Especially when I have sick kids who need to start eating again. This was a fun breakfast. The kids love to help cook. I remember Luke’s very first occupational therapist telling me how great it is just to include him in every day activities. Things like; Pushing a laundry basket, sorting clothes, sweeping with a broom, washing kid friendly dishes, letting him help put away groceries, cooking together. She said another good one is letting him spray and wipe off tables. That takes some muscle to push the towel across the surface. Sounds good to me. Just go ahead and clean the whole house Luke! This is the greatest OT idea yet! Really if you think about it, these activities do use huge amounts of coordination, muscle control, and skill.  Fine and gross motor skills. Cooking remains the favorite for Luke.

I did manage to get Luke to eat a couple bites, but he is still really trying to fight off this flu. I’ve had a house full of sick kids all month long. This has been awful. Please say a prayer. I hope this is almost over. I’m ready to rip my hair out!

So sweet, such a family effort.  Lily made this Halloween chart for Luke to practice with. She wanted him to be able to say some things about Halloween time.  She only got a little mad when Luke decided to color on the witches hat. Luke really has an advantage of having older brother and sister that try to help him with his talking. It makes me smile to watch!

Always looking for an OT moment!

Whoa!

So much suddenly going around here. Exciting things for Luke. Big changes. New adventures. Trying to find some balance myself.  One step at a time. One day at a time. Luke always seems to show me the way!