House of Krause

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!

Blessed are you who take time to listen to difficult speech:

For you help us to know that if we persevere,

We can be understood.

Blessed are you who walk with us in public places,

And ignore the stares of strangers,

For in your companionship,

We find havens of peace.

Blessed are you who never bid us to “hurry up”,

And more blessed are you

Who do not snatch tasks from our hands to do them for us,

For often we need time rather than help.

Blessed are you who stand beside us

As we enter new and untried ventures,

For our failures will be outweighed

By the times we surprise ourselves and you.

Blessed are you who ask for our help,

For our greatest need is to be needed.

Blessed are you when you assure us,

That the one thing that makes us individuals

Is not in our peculiar muscles,

Nor in our wounded nervous systems,

Nor in our difficulties in learning,

Nor any exterior difference.

But is in our inner, personal, individual self

Which no infirmity can diminish or erase.

Author Unknown

Keep Chuggin' along my little train Boy!

My Lily diligently saved her money for the past year and a half! She has more will power than I’ll ever have. Now she is feeling the joy of her efforts, she bought the family a 6 week old yellow lab. Lily named her Penny.  She says she’s worth every “Penny!”  The man had a good chuckle when she paid him $300.00 in mostly ones! The pup is a little sweety. Were all fighting over her! It’s just like having a new baby in the house. I think it’s wonderful to see how excited the kids are and it’s given them something positive! We had another yellow lab “Daisy” who passed away a couple years ago. We have all missed her. We’re happy about our new baby girl!

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 ll’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 have been asking 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-ta, 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.

Happy Birthday to the coolest person I have ever met- I’m proud to say your mine! Thank you for always keeping my glass half full, you are my inspiration! Hope you have a wonderful birthday Paul! We love you so!

Daddy's breakfast in bed!

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Romans 5; 1-5

Therefore being justified by faith, we have peace with God through our Lord Jesus Christ. By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God. And not only so, but we glory in tribulations also: knowing that tribulation works  patience; And patience, experience; and experience, hope And hope makes us not ashamed; because the love of God is shed abroad in our hearts by the Holy Spirit which is given unto us.

James 1;2-4

Consider it pure joy, my brothers, whenever you face trials of many kinds,because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

Thank you for your prayers for Paul. He had three surgeries today. Everything went well. He is a bit sore tonight and just taking it easy. We feel relieved that all has been removed and we are hopeful for a clear pathology report sometime next week. Going into the John Wayne cancer institute is not an easy thing. Obviously everyone there has a story and reason for being there. I was struck down with humility today!  I turned to say Hi to a lady who came in and sat next to us, and well, much of her face was missing! It made me realize we are all just passing through, this is not our forever, this is merely a skip of a rock across the water. None of us know what tomorrow holds.  How joyous are hearts would be if we could really get past worrying about what lies ahead and and just live for today! I felt Paul and I had a real sense of peace as we drove home.  Those hours were over. The sun was shining brightly, the mountains were covered in beautiful snow. I was praising God in my heart!

Thank you Lord, refine us, draw us near to you, hold us in your hands. -Amen!

Job 23;10

But He knows the way that I take ; when he has tested me, I will come forth as gold.

Let’s start at the beginning.  Do your remember the song…Head is connected to the neck bone…Neck bone connected to the shoulder bone…shoulder bone connected to the arm bone… so on and so on…you know the rest. Well that’s just the thing, our bodies are wired and it’s all connected!  Luke has a play therapist and and Occupational therapist(OT) in addition to speech. People have wondered why have those services when Luke has a speech problem? Yesterday made me realize the true importance of an O.T, and how it all works.  If we can improve our large motor skills then transition to improvement in fine motor skills, this can help us to develop the finest of the fine motor skills- TALKING! Think for a second, what most of us take for granted. To move lips and the tongue to the precise position to form an exact sound within a split second. Then having to change that position 3 and 4 times, depending on a word with more syllables. Not easy when you have a motor planning disorder. Not easy at all. So getting to that point, being able to make sounds, may be best started with an Occupational therapist. If muscle weakness is an issue O.T’s can help work on oral motor strategies. Strengthening the muscles around the mouth, cheeks, tongue. Again think about if your child has never were really been a talker, there might be a good chance those muscles haven’t been worked out much!  They can help children become more aware of their bodies. Nancy said yesterday some children are not even really aware that they have a mouth. There’s definitely things you can do as a parent too. If you think your child is having muscle weakness and other difficulties. Luke used to have issues of packing food in his mouth because it never felt full until he was gagging. (Below are some posts about oral motor strategies) Of course it’s best to let an OT help you out, but I just know how long and frustrating it can be  waiting for help!  Play therapist/ OT can help get your child get to the point of being ready to use those fine, fine motor skills!

SIGNING

Also, I wanted to say that sign language is an invaluable tool! I am convinced that Luke would be a totally different, frustrated child if he had not begun signing.  I can’t imagine his frustration levels by this point.  And rightfully so! Just a few basic signs is so beneficial.  And if you think back to the connection process, using more motor skills is going to help the brain just make more connections. Nancy Kaufman talked about K and K sign and say. It’s an approach of pairing sign language with spoken words. It looked like a wonderful program that was being used with lots of different children; Autism, Speech Apraxia, Downs syndrome.

Today has been a day filled with so many different emotions. I was very excited to attend an all day conference with Nancy Kaufman (the Apraxia Guru). The conference was mainly geared for speech pathologist but it was also open for parents.  I didn’t really know what to expect.  It was great to sit next to Luke’s speech therapist Megan, she was able to point things out in reference to Luke.   It’s so comforting to know he is receiving the best therapy at Lucid speech!  I can’t say enough about the caring and compassion that has been shown to us, and honestly the hard work! There are days I have cried through Luke’s entire therapy session. Miss Megan hands me a tissue, then carries on with her work because she knows she only has 25 minutes to work with him. She is supportive in understanding of my feelings but she is committed and focused on the task at hand. Well today I made it through the entire conference with no tears! Then I got in my car and cried most of the way home.  The conference was extremely positive! There was so much information,  I’m going to organize my thoughts and definitely share all that I can with you in upcoming posts.  So I’m sure you’re wondering why then would I be crying??  I’ll admit I am sensitive, but beyond that I guess the hard parts of it is truly not knowing how the story ends.  When you spend the day faced with the reality of it,  well it troubled my heart. It was interesting to see just how truly Apraxic my son is. He fit in nearly every way! I saw aspects of him in so many of the children’s videos. Another hard fact is watching the work that these precious kids spend learning to talk. Years and years! Videos of a child at 2,3 5,7. Something that came so easy for my first two children but is so so hard for little Luke.  Knowing he is facing the same work ahead! Honestly as I drove home I did question”God, why?” Not like in a mad or angry way, just truthfully asking, “Lord, why??” And not just about Luke but why for all the children I had seen. Then the vision of a beautiful porcelain face, bright twinkling blue eyes, and waves of toe head blonde hair flooded my mind. My sweet Luke! It came to me that these are special angels on earth. They amaze us and show us lessons that can only come from a child. I know I’ve said it before, lessons about how to keep going and never give up! Showing us that hard work pays off. Showing us that happiness is certainly not measured by how many brain cells connect! Light and hope radiate from their stories! So with that little face ingrained in my mind,  I said to myself “Buck up! No more crying, seek God, trust Him, take all the information you learned today and do everything you can to help your son! So when it is all said and done, and you stand before God you can say and know in your heart you did everything you could!” I would walk to the ends of the earth for all of my children, I want to have no regrets! Well, I got it out of my system,  the Lord tossed the troubled heart and filled it with joy! Preston and Lily both had friends over so they were uninterested in my return, but Luke was waiting. I started right in with him on Nancy’s techniques.  We had over the top fun. I had that boy more excited and attempting more words and sounds then ever before. I’m excited to see what tomorrow brings!

Miss Megan, Me, and Nancy Kaufman!