House of Krause

Tomorrow is the birthday of one very handsome, hardworking boy.

You teach me so much, you are a fine little man. Happy 5th Birthday!

Love you always and forever,

Mom

We had ear tubes at two years old. Stationary ear tube next to a grain of rice…

If you are anything like me, you’ve probably asked your self a thousand times how will this all turn out? Several people told me how awesome the CASANA (The Childhood Apraxia of Speech Association of North America) conference was this year. I heard they had very special guest speakers…an exceptional group of teenagers & young adults who have Apraxia.  I hope they understand how many mothers sat and cried tears of joy because it renewed their faith that someday their own children would talk, and talk well. Thank You!

I will miss you…

Lot’s of change going on at the House of Krause. I just need to find a few extra hours in the day to blog about it. Much Love, Jen

Imagine a world where every special child has their needs met. All children who struggle to communicate receive one on one speech therapy with an SLP who can literally change that child’s life forever. This is what 3LW’s aka Three Little Words is going to accomplish…

It’s been almost two years ago now that I was approached by Cynthia Gruber. She heard Luke’s story and asked us if we would like to be involved with her cause. She was starting up a non-profit organization. Her goal was to raise money to fund children who could not afford one on one speech therapy. Lucid Speech and Language Center was involved.  I did not hesitate. I’ve seen it over and over again, children suffer because insurance companies won’t cover speech therapy. We met with Cynthia and her team. We took pictures. I corresponded with her a bit in e-mails. I sent her our story and then really didn’t hear anything else. Every now and then I  wondered what ever happened. I figured in this economy funding is impossible to come by. I figured it probably just didn’t work out. Well, I was wrong. I under estimated the power of a mom who had first handily experienced the struggle of raising children with special needs. First I received an e-mail requesting the OK of their new business cards and a link to their new website…

Of Course I was excited. Best business card I’ve ever seen

Then last night I got another e-mail. Cynthia wanted me to review another important part of what she had been working on. She said I may be interested in checking it out, wink, wink…

Click here-Capital One

I just about fell out of my seat.  That’s my baby on a credit card? Never in my wildest dreams. This card has the potential to change many lives. I am so proud of Luke for being the person he is. I am proud of him for working so hard and helping other children find their voice.

I hope you will share these links below. Find Three Little Words on Facebook and LIKE them, spread the word about this awesome (first ever of it’s kind) foundation committed to providing one on one speech therapy for children, and share in my joy because having you to write to has allowed me to tell Luke’s story!

Love, Jen

helpchildrenspeak.org

3lw

Capital One-Three Little Words

P.S And for goodness sake if you or anyone you know needs a new credit card, get one with Luke’s face on it… LOL

I’ve come to realize one of the most important elements in life is the ability to relate to another person. This is an e-mail that came to me from a wonderful mother searching for answers, finding them, and trying make sense of it all. I wanted to share her story because I want you to know you are not alone….

M writes:

I gather from your most recent blog entry that this email is one of many of its kind, but I still wanted to write. I just watched your video and I have tears streaming down my face. This is us. You were saying things that have come out of my mouth verbatim; it was unbelievable.

My son C just turned 20 months old. C is my first biological child and my first baby, the first time I’ve ever been through any of these milestones. Like Luke did with “duck”, between 9 and 10 months of age, C said “dog”one afternoon at the vet clinic, clear as day. At 11 months he said “Brova!” (brother) several times in a row when he saw his brother. But then he never said either of those words again. At 12 months he said nothing, at 14 months, nothing. By 18 months, he had learned to make some noises so that if I said “do you hear the birds?” he might respond “hee hee” (for tweet tweet) or when he sees a big truck he goes “Hrrrmmmmm”… but no words. Everyone, including his pediatrician, told me that it was nothing to worry about, that kids all develop at their own rates, that one day he’d out with a complete sentence.

However, there were other strange things - When we introduced solid foods, he seemed to have trouble. If we fed him foods with mixed textures, like oatmeal, he would often gag and throw up. When we got to solid food, C would hold things like bits of cheese in his mouth sometimes for an hour at a time and/or he would cram food in his mouth but not swallow it until he had a whole wad of it in there that we’d have to clear out with our finger. No problem, said people, he’s a breastfed baby. It’s normal for them not to be interested in foods until later. He’ll be able to eat when he’s ready. But then he couldn’t blow bubbles and he couldn’t seem to learn to use a straw or drink from a regular cup. Although he smiles spontaneously, he doesn’t mimic facial expressions and when he tries to put on chapstick, he puts it on his tongue or on his chin, but never his lips. It is like he doesn’t know what his face is doing and he thinks it’s doing something else. He is good at communicating what he needs and is a master of the point and “da?” multi-purpose sound. He has a few signs but isn’t an enthusiastic signer when we have attempted to introduce more. People suggested maybe I was too responsive and told me to make him “work for it” (a strategy which failed spectacularly when I tried it). People told me to talk to him and read to him - which made me roll my eyes as these are both things I’ve been doing since he was born! Mostly people said “don’t worry.” Even my husband said that C was fine, that he was obviously bright and would talk any day. And so I waited.

Eventually I got tired of waiting and called his pediatrician who said if I was concerned, I should contact our local state-sponsored early intervention program. I have spent the last month navigating their various hoops (file this, wait 7 days, sign this, wait 7 more days…). We finally had an evaluation last Thursday. I really liked the SLP - she seemed like the first person to understand what I’ve been saying all along. She told me what I already knew - that C’s gross and fine motor skills seem fine, that he has good receptive language but his feeding skills are delayed and his expressive language is severely delayed. She told me that she couldn’t offer a diagnosis right then and she had mixed feelings about even suggesting this, but, after everything she’d seen and everything I’d told her, she suggested I might want to look into something called “childhood apraxia of speech.” She encouraged me not to freak out when I Googled it but thought I should know the term and push for possible treatment/screening in that direction.

So, naturally I have spent the last 5 days in full research mode. I know I need more evaluation, but this seems like a fit. As you said in the video, I think I’ve always known that something wasn’t right, even though I clung to hope that I was wrong. I did so many internet searches over the last few months but always ended up ruling things out - no, this doesn’t look like autism, no this doesn’t seem to be a global delay… Now after getting this magic word and finding this wealth of information, I oscillate between being relieved that we may finally have a name/that we’re not alone/that there are some possible treatment ideas and despair that there really is probably something seriously wrong with my beloved baby. I am having a hard time.

Every day one of our friends with a similar aged (or younger) child posts something on Facebook about whatever new thing their kid is doing - J can count! T is saying 2 and 3 word combinations! G just said “octagon”! K won’t shut up about planes!… etc., and I feel a wave of rage at the unfairness of all of this and anger at this parent and their child for bragging about their amazing luck - which is promptly followed by a wave of guilt for being angry at a parent who has done me no wrong and is simply excited about their child’s progress.

Rationally, I get that this is a process. I know I need to pull it together and move forward to find out what needs to happen for C. I know that. But I am so overcome with despair. It is like there is some huge wall of sadness that is following me around - and has been for long before we got the word “apraxia.” I have known for a long time in my heart but I would forget for a while and be so happy with all the wonderfulness that is my little boy, but then I’d turn suddenly and there it would be with this horrible sinking in the pit of my stomach.

I don’t know what the point of any of this is or why I’m writing an epic email to a woman I’ve never met. I guess I just needed to get it out. If you’ve made it down this far - thanks for listening! Currently I think my next step is to try and find a private practice SLP. We’re still moving through the system for our state program, but given much of what we’ve experienced so far, I don’t have super high hopes. I figure too many options is better than too few so I’m putting out as many feelers as I can.

C had no words at all until very recently, when we did pick up “mama” “dada” and “baba” (what he calls his brother). Occasionally he’ll randomly say “goggy” for doggy or “Googie” for cookie but doesn’t seem to be able to say them on demand. He did recently learn to blow a toy whistle and we’ve been working on learning to blow bubbles this weekend (hasn’t quite gotten it yet). He babbles a lot, though the sounds are inconsistent with no meaning assigned that I can discern. Still, I hope that some of these things are promising. That maybe if he does have this it’s not too severe. I don’t know. I guess we go on from here.

Anyway, thank you for your blog. I hope you keep posting and I am so glad you’re out there. This is like finding myself in a terrifying long dark tunnel with no end in sight. I can’t tell you how helpful it is to see someone with a torch up ahead.

Best,
M-

THANK YOU M FOR ALLOWING ME TO SHARE YOUR STORY WITH OTHERS!-Jen

My Child

Has Apraxia

Dear Teacher,

This year you’ll be having my very special child in your class. When you look at my child,you will see eyes that light up and are full of life. My child has many wonderful abilities and talents. He or she looks like the other children in your classroom. But my child has lived with a lot of silence and a great struggle to communicate. My child has Apraxia of Speech.Childhood Apraxia of Speech is a speech disorder that makes it difficult for my child to correctly pronounce syllables and words. Children with apraxia know what they want to say.The words are in their heads but often the child is not able to produce the words clearly.For unknown reasons, children with apraxia have great difficulty planning and producing the precise, specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. As one expert has said, “The problem occurs when the brain tries to tell the muscles what to do — somehow that message gets scrambled. It’s like trying to watch cable TV stations without the right descrambler. There is nothing wrong with the TV station, and nothing wrong with your set. It’s just that your set can’t read the signal that the station is sending out. The child must figure out how to somehow unscramble the mixed messages her/his brain is sending to her/his muscles”. Children with apraxia, however, do understand language and speech. Yet others might mistake and misjudge their unclear speech or quietness as a lack of intelligence. Many children with apraxia experience a great sense of failure and frustration in their attempts to communicate. Some children grow even quieter; others may act out their frustration. Children with apraxia need the support of teachers and parents. Each child with apraxia is a unique individual, with their own set of abilities, needs, and challenges. However, one common theme is that for some period of time, children with apraxia of speech need frequent and intensive speech therapy that is targeted to their greatest challenge so that they can learn to accurately produce syllables, words, and sentences. These children truly need the services of the Speech-Language Pathologist (SLP).The SLP can work with you to help create a way for my child to communicate with you and classmates, demonstrate what he/she is learning in your class, and to continue improving his/her speech ability and communication. In addition to actual speech skills, at some point of time it is likely that my child will also need to work on expressive language and conversational skills. Thank you for taking the time to read a little bit about my child’s speech disability. On the back of this sheet are just a few ideas about what can help my child in your classroom. Please let me know if there is anything I can do to help you better understand my child and his/her needs.

What you can do:

-A speech-language pathologist (SLP) needs to help my child learn to speak with more ease and clarity. It will help my child if you communicate frequently with the SLP and determine if there are things that you can do in the classroom to help my child communicate and practice speech.

- Try to create a tension-free and interesting “communication environment” for my child. Encourage but do not insist he/she try to speak. Praise his/her attempts at speech, if only for effort. Please know that sometimes my child might not respond or might respond “I don’t know” as a way to help themselves get out of a difficult communication challenge.

- Be patient. Sometimes the fast pace of others can leave my child out of the experience although he/she may be able to successfully communicate if others just offer a bit more time and patience.

-Watch for and even create opportunities to help my child make friends. It can be difficult for a child with apraxia to “break into” social communication and situations. A supportive and nurturing teacher can surely help. No child should be lonely and all children need a friend.

-Intervene immediately in any situations that involve bullying or teasing. Reassure my child that you are his/her supporter and advocate and that no teasing is acceptable.

- Be aware that sometimes children with apraxia are also physically uncoordinated, making competitive sports or even drawing, cutting, and other motor tasks difficult. If you notice something, please do bring it to my attention so we can work together to help my child.

- Keep alert for any other signs of learning difficulty. Sometimes children with apraxia have difficulty learning to read, write, spell or do math.

- My child may need to communicate in alternative ways. Often sign language, augmentative devices, or pictures can help my child as a bridge to clear speech, helping us gain insight into his or her thoughts.

- Most of all, please include me as your partner. I want very much to help my child and to do everything possible to support you as my child’s teacher. I hope we will always reach out to communicate and share information with each other for the benefit of my child.

© Copyright, Childhood Apraxia of Speech Association of North America (CASANA), All Rights Reserved.

CASANA has put together some wonderful free printable downloads. This is a great way to explain your child’s Apraxia to his/her new teacher. Click to see all CASANA’s downloads.

I feel like I can’t write anymore. I’ll start posts and end up erasing everything.  I write and then I read it and I’m just not being very honest. My writing has changed since my mother passed away. Parts of me have changed. I have struggled with the hard work that comes with Apraxia. This past year I have struggled period. But what bring me back to this page, “write post” is when I get an e-mail from a broken hearted mother who’s just received the news her child has Apraxia. A word she’s never heard of before, a speech disorder she never knew existed, her sudden realization that there’s going to be a road ahead. She’s found my blog and she wants to know how I did it and stayed so positive? I have not read back though my old blog posts much. I’m glad people say they are positive and encouraging. I know I was scared, very scared. There are still times I breakdown. But like always, Luke shows me the way. We face things together. I remind myself that the little boy I wasn’t sure would ever talk now comforts me with his words. When I look into his big blue eyes, I see hope, I see a future and it’s a bright one…

As we end the school year I just want to say a huge “Thank You!” to Luke’s teachers who have helped him not only in speech but in so many other ways. He has accomplished many wonderful things this year. You have given him the gift of encouragement and support that will stay with him always! You have made an impact on my sons life and I will forever be grateful!

THE DREADED HOPEFUL IEP

Coming into the world of special needs is a very confusing and frustrating time.  Just when you’ve finally figured out what “Apraxia” means, you’re slammed with another fifty words you probably never heard. I’ve been thinking back to a time when all this was new to me. I feel good about where I am today. To me it’s become pretty simple, YES my child is special, and YES he has needs! Just as easy as that. I am no longer intimated by words. They are just that, WORDS. As far as I am concern we all have special needs, every single one of us. I like my music LOUD and my water scolding hot. I must have sensory issues, maybe I need an OT?

If your child requires special services and you are about to enter into the public school system, there is one book you must read.

www.nolo.com

This book will provide you with all the information you could ever want to know about how to successfully navigate through this new world. I wish I had it two years ago. I’m sure this is the book the school district does not want you to know about. It will teach you what to realistically expect and how to obtain the best education for your child.

Let me explain the basics.

What is an IEP?

An IEP stands for an Individualized Education Program.

It is a meeting, a document, and a description of your child’s entire educational program.

You are an equal part in the IEP process. Without your approval nothing can be implemented.

What is IDEA?

IDEA is a federal Law, binding on all states. The federal government provides financial assistance to the states to implement IDEA. The states must follow the laws that implement IDEA. Want more info? Go here; http://idea.ed.gov/

IDEA is geared toward regular education, but did you know IDEA requires that school districts provide many alternative placements, called “continuum of placement options”? I talk to many parents at work whose child receives speech therapy services even though they are home school children or with a charter school. Other options include; regular classes, special classes, public/private specials schools, charter schools, residential, home instruction. Often parents don’t even know they could still receive services for their child if they decided to home school. A couple programs that caught my attention are CAVA and DEHESA.

What types of services are available?

Speech-language pathology and Audiology services, physical and occupational therapy (for an Apraxic child who has drooling and/or oral motor issues, this would fall under Occupational therapy needs) psychological services, interpreting services (Does your child use sign language? Your child may qualify for an interpreter), one-to-one instructional aide, art therapy, social work services, technological devices, special computers, school nurse services, counseling and rehabilitation services.

Who will be at my child’s IEP meeting?

You, your child’s teacher, school administrators, specialist (the schools speech pathologist, OT, PT, ect.), Beyond that would be anyone else you want to participate. An example of this would be, your child’s physician, current SLP, current OT, PT, ect. Anyone who could bring helpful information about your child to the table. Some parents may choose to bring their lawyer.

Once we sign an IEP for our child can it ever be changed?

You will have an initial IEP meeting. After that, meetings are held yearly, focusing on your child’s current educational program and what the following year’s IEP will look like. Once you sign your IEP it is a binding contract. However (and I just learned this) you are entitled to an IEP meeting whenever you feel one is needed. You can also request a review of your child’s IEP at any time to check on current goals and note if they are appropriately being met.

I asked our clinical director if she could give me her top three suggestions for parents going to their fist IEP meeting.This is what she said;

1. She recommends parents never go alone. A second set of ears is extremely important. People tend to interpret things in different ways. Bring your spouse or a friend. However, that being said, she does not recommend taking a host of (or any) professionals to your initial meeting. You do not want to appear defensive when there is no reason to be. You have no idea what they might offer you. You do not want to walk into your initial IEP with your guns blazing. Go in with your defenses down. There may be a time you need reinforcement and back up but it’s not likely in the first round of negotiations. You could be pleasantly surprised and agree with the services and goals they have set for your child. But what if you don’t? This brings me to tip number two.

2. Never sign an IEP on the spot. Though the team may not like it, take your IEP home. Read it again and again. Make sure the services offered are appropriate for your child. This will also give you the chance to show the IEP to appropriate people. Let them read over it. Get their input. Make educated decisions from there. Call for another meeting if you need to.

3. REMEMBER, you are part of the IEP team. Be a team player. Focus on working together with the school district. Be open minded. Hope for the best!

I‘ve had the pleasure of getting to know a wonderful mom who has been through many IEP’s for her son. Her husband is an attorney and they offered this advice to parents new to the process;

1. Do your homework. Look through reports, paperwork, talk to your child current SLP’s, OT’s, PT’s. Get their input on what might be some realistic goals and services for your child. Know what your child needs are. Know what you expect to ask for. Bring in reports and document that you feel maybe helpful in making decisions.

2. While focusing on your most important issues, don’t over look other needs your child might have. It won’t likely be addressed unless it’s something you bring up as a concern.

3. Tell the team a personal story about your child’s struggle. Show your emotions. This may give them incite and compassion on a more intimate level. It may help them understand why you feel so strongly about certain goals and services.

4. Be realistic. Don’t allow the team to set goals to low for your child so they can easily be met with minimal effort on their part. On the flip side do not set goals that are way beyond your child’s current reach. Be realistic, be appropriate.

5. School budgets are getting worse but cost should not be a factor in your child’s program. If a school district says, “We can’t afford it.” you can respond that the law requires the IEP team make decisions based on your child’s needs, not on the school budget. More money can be saved if school districts address problems when children are younger.

I wish you the best of luck with your IEP’s. I hope you can turn the dreaded IEP into the hopeful and successful IEP!-Jen

4/14/08.

I suspected today would be a rough one. Day after Easter, the kids were up late. They spent all day shoving candy in their mouths. Luke started his Easter with marsh mellow peeps, ended with pie.  Each stop, more eggs,  more candy. I knew Monday we would all be movin’ slow. Especially me, not really in the mood to drive to Murrieta for Luke’s speech therapy.  But so it goes, I got the coffee, hooked up Luke’s DVD player,  we raced out the door, stopped and picked up Nana and off we went.  Well first we figured out my right blinker was not working by nearly killing ourselves several times and wondering what exactly was the problem here. Mostly me yelling at people when it was my own fault. They didn’t even know I was coming over!  So we figured out the light situation and drove oh maybe ten more miles going about seventy (the speed limit) down the freeway. Well all of a sudden at the consul area of my car there’s a huge Pop, Bang, then sparks and smoke! I’m serious, we nearly hit the deck. My mom bless her heart thought some one was shooting at us. Well now we look down and figured out my new phone charger just exploded and is now on fire. So my mom was thinking maybe to dump my coffee on it. I was thinking no, that may start an electrical fire.  I didn’t know if I touched it If I might get a zap. But we managed to get it unplugged. It smoked for a bit. All while Luke was happily watching Mickey Mouse and having his juice! The rest of the way  we tried to relax, we were fine and we had a few laughs about the crazy drives to Murrieta!  Well turns out Luke wasn’t really in the mood for therapy today either.  He’s been working  on the ee sound.  Like Po-ee for pony. Ha-ee for honey. Ba-ee for bunny (for Easter).  He’s been working very hard and it is a brand new sound. Add that with to many marsh mellow bunnies on Sunday. He was waving bye- bye five minutes into therapy. He cried and reached for me the way he used to when we first started. It wasn’t easy but I found the brave face and we all encouraged him to get through this last set of ee cards. Inside I just wanted to make the sounds for him.   He reluctantly made it through. It was difficult.  We made it home but stayed in the slow lane. I think my mom literally kissed the ground when I dropped her at home.  Later on this afternoon Luke was happy to have his brother and sister home from school.  The kids and I were playing in the back yard when Luke discovered a wonderful word that utilized  his newly found ee.  We all stopped when Luke called out   “Li-ee!”  The girl of his dreams,  Lily! The smile on his face, and the pride I saw in his eyes, knowing he got her name to come out so wonderfully. He practiced a dozen more times and we all clapped and cheered. It made me feel so happy for him!  The freeways, small explosions, and the brave face, all so worth it! Even though he’s young he already knows what his struggle is. This moment was very meaningful for Luke.  He caught a glimpse of how Kaufman cards, speech therapy and Miss Megan, all connected him to calling someone he loves…Lily!

They are still best friends

March 27, 2011

Well we’ve very excited to say Luke had some more testing a couple weeks ago. He has so many sounds, and is receptively so smart. We still need to work on some more articulation issues. But by in large Luke is close to saying, “I have conquered my CAS!” When I read some of my older post it takes me back to a scary time when I didn’t know if he would ever talk? It warms my heart to see how far we’ve come

.

I can’t wait to show a video of Luke now…I will hopefully get one up soon.

Love,

Jen

HAPPY BIRTHDAY CHLOE!!!!!!!!!