A Mom Documents Life’s Journey Including Raising A Precious Child With Apraxia
“I know that nutritionally something was missing. Luke’s diagnosis is apraxia of speech, dyspraxia of motor movement, sensory processing disorder, hyperkinesis and congenital anomaly. He is 3 and a half years old and has been in intensive therapy since 18 months old.” ~ Mary, Luke’s mom
From Mommy Square ”My Life as Mother and Wife Documenting the story about our journey with apraxia of speech and all the other important things in life” (Shared with permission)
“I am a mommy to 2, Luke and Maggie. I decided to create a blog to share moments from my life with others. I also wanted a way to preserve memories without scrapbooking!” ~Mary
Written by Mary in 2010 prior to NV original
“I have been praying that I would find a way to fund all of these therapies that Luke needs in order to be able to speak. …we need to raise $3,000. (the cost of extra therapy until spring)”
Written by Mary in 2011 prior to NV original
“Yes, we are making progress…baby steps, but as soon as we take one forward~it seems like we take 3 more backwards. ”
Written by Mary in 2012 prior to NV original
“… we have done everything under the sun. Intensive therapies, speech since 18 months of age (he is 3 and a half) Been to Michigan to see Nancy Kaufman 4 times in the last year, we did also go to the Star Center in Colorado to see Lucy Jane Miller’s team. We pan to do more intensives with Nancy at the KCC in the spring, Lynn C. of speech ez apps in Arizona and apraxia camp in DC this summer, have done chiropractic, craniosacral therapy, healer, everything besides tying chicken bones around his neck.”
Luke’s video before NV original from October 31st 2011
A sign that Luke will clearly not need next Halloween…even if Halloween was tomorrow!!
Luke after 2 weeks on NV Original March 3rd 2012
The Journey of Luke as described by his mom Mary in her blog (with sister Maggie and dad Brad)
Mary’s description of herself from 2011
“I am sure there are lots of adjectives out there in which to describe me.
I am a…Mother. Wife. Daughter. Sister. Aunt. Friend. Neighbor. Advocate. Educator. Part time SLP, OT and PT (not really, but someone should give me a degree for the amount of hours I log in weekly doing therapy) Drama Queen. Party Planner. Grant Writer. Fund Raiser. a Giver. Outspoken. and also a Rottweiler~especially when it comes to my family. I am… Loving. Caring. and Tender Hearted. I have been called concrete-a-la-tete’ (cajun french for hard headed)~
I like to see both sides of an issue, though. I am a perfectionist. I don’t like to meet standards, I strive to exceed them.
I am pretty organized. I am a pathological picture taker. I facebook and I blog. I am also a parent at my whit’s end! Frustrated, honestly doesn’t seem to do my feelings justice.
I am beyond frustrated. I am truly done with all of this. I loathe the health care system. I can’t stand health insurance companies, especially mine~United Health Care. I should not have to beg, fight, plead, cry, beg again, and cry some more for the help that my child needs. This isn’t a want, it is a need! Every waking and slumbering moment of my life should not be filled with worry.
This is my child’s future, my son’s life and I will not be silenced. I will not SHUT UP!I will speak for him until he can speak for himself. I will always stand up for what I believe in, especially injustice!I will not apologize for my opinions or my beliefs. Never have, never will. And you can take that however you want to take it~it is the truth. “
Mary explains on her blog the various therapies and programs that she and her husband have taken Luke to in hopes of finding his voice. The Kaufman speech center in Michigan she took him to a number of times, and in addition to various speech and occupational therapies, explored some complimentary therapies as well such as therapeutic riding therapy through Jacob’s Ladder. Mary and Luke even flew out to Colorado by themselves to explore therapy at the Star Center.
“We went all the way to Michigan to get a diagnosis and devise a plan of action~and were told that he could be taught to speak…if we used the correct methods and the intensity that is needed~he could talk! I just can’t stop now… I mean, how can I explain to Luke that I tried to help him, but didn’t do everything in my power to achieve it. We keep saying that we need more therapy and keep begging for it, but nothing has really come through, especially not Babies Can’t Wait (which is ultimately because of cutbacks from the state” ~written by Mary prior to NV Original
All the therapy showed progress in Luke! Sometime in October of 2011 Luke learned how to say “nobody” perfectly! He also knew how to say “no” perfectly too! That’s what sometimes happens with apraxia that a few words that are in their “motor memory” may come out perfectly, and they will choose to use those words whenever possible. However each word is a mission and a quest, and as you’ll note in the following videos do not come easily to one with apraxia. Even with all the years of various therapies, apraxia is historically a long, tough, frustrating, and many times expensive road.
Here is Luke October 31st 2011 right before he went trick or treating to give you an idea of how his speech is at this time. As you will read below this is after various intensive therapies from before 2 years old.
And here is Luke practicing knocking on a door to say trick or treat October 31 2011
From November 27th 2011, about 3 months ago, Luke is still using sign language to communicate with his speech. Here he is saying he is hungry
“I know that nutritionally something was missing. My dad is a HUGE researcher and health enthusiast. He couldn’t get over the nutritional value in NV original. He has gotten Luke to take the supplements, when my mother and I couldn’t.”
The following is when Luke started Nutriiveda Original from mid February 2012 from Mary’s blog
“I have said it before, and I will say it again….we will do whatever it takes to get Luke to speak, even if it means we have to tie chicken bones around his neck.The good news is….we aren’t tying chicken bones around Luke’s neck~at least not yet.
A while back, I found and heavily researched Nutriiveda Original.
And of course, I joined the facebook groups (www.apraxia.org) about NV…friended Lisa Geng (one of the authors of The Late Talker) and I was SOLD. We were buying this “shake” and going to get Luke talking. We ordered Nutriiveda and here is what you won’t believe….it sat in the nicely fed ex boxes that it came in…..in our pantry.
I know, I could kick myself now. But this is to let all of you know that I am not the superwoman you think I am. Sometimes, I am human.
The Luke you see is the darling little one on youtube that works so hard for every syllable, but when it comes to getting him to eat or worse…to brush his teeth. It isn’t pretty.Enter my father, aka Chuckie.
He can get Luke to do just about anything. AND he is the health, nutrition and supplement guru. (All joking aside, my dad knows his stuff)I shared that we had purchased this supplement called NV Original and we had tried to get Luke to drink it once or twice, but really didn’t do anything more. Nutriiveda Original was supposed to get him to talk, it had with other apraxic children.
I shared some of the testimonials, etc.In true Chuckie fashion, he said “gimme the can”. He began to read and we exited as fast as we could. (for those who know my father, you know why I left…I didn’t know what was going to come out of his mouth next~like why the heck had I wasted money or why the heck hadn’t Luke been taking this wonderful supplement…I didn’t know and didn’t want to stay to hear what was coming…good or bad~God, love him)
Chuckie called later to tell me that this NV stuff was legit, it was healthy and it would at least get him the nutrients he needed into his body. He didn’t know if it would get him to talk, but he did know that it was safe and a good addition to his diet.
My dad started feeding Luke a little of it a day to build up his taste~he even used shot glasses to entice Luke to drink it down. And that he did…..we started getting at least 24 ounces a day into him~that mixed with a scoop.
Two weeks later….we kept trudging along, sure we had more repetition of words, more attempts, but who was really counting? LOL!!!And then it happened. The SURGE that everyone on NV original talks about…..he said almost a paragraph. Now, it wasn’t correct english. But it sounded brilliant to me.
Is it the NV original? Is it all of the therapy? Is it just finally clicking? Dunno for sure, but what I do know is………….. God continually guides our hands on the masterpiece He is creating right before our eyes.And we are eternally grateful~
Guess who told us he wanted some ice cream and didn’t just sign it today? You guessed it and I was able to catch it on video
Luke’s update after 2 weeks on NV original March 3rd 2012 ”I want ice cream please”
UPDATE 4.12. 2012
Guess who told me ‘your kidding me’ today and in perfect context?!? He is saying so many things now. I can’t keep up and I am running out of fingers to count the words in sentences. I cannot believe how far we have come in only a few months! New words this week: Peter pan, Captain Hook, download, never Take that severe apraxia diagnosis!!! And thank you NV!!!
PS My dad mixes the vanilla NV with Hershey’s chocolate sometimes, sometimes with yogurt or reduced fat ice cream and sometimes he freezes it into popsicles. He is a pretty structured guy and keeps Luke on a schedule, so Luke knows exactly what their routine is and goes with it. Chuckie keeps feeding it to him until it is gone.
I am trying to do more video, but mostly it is the spontaneous speech that I can’t get on film. Below is proof here’s proof the boy is talking and communicating his wants and needs politely too! 4.12. 2012
Congratulations! Luke is doing amazing!!! Below is a beautiful image that speaks a 1000 words about one wonderful family!!! In the photo is Luke with his big sister Maggie, and his mom Mary and dad Brad.
For more help with picky eaters including in regards to NV original
Read more of Mary’s Blog “Mommy Square ~My Life As Wife And Mother“
If you want to congratulate Mary on Luke’s progress so far, please share in the comment section below or at her blog!
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