tag:blogger.com,1999:blog-58657503464279885482024-03-04T20:44:53.964-08:00Team StriveFollowing Brett on his journey striving towards independenceJodyhttp://www.blogger.com/profile/06227172010714967395noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-5865750346427988548.post-48135061107377642872016-10-05T03:52:00.002-07:002016-10-05T03:55:00.868-07:00Cerebral Palsy - We are HereToday is World Cerebral Palsy Day and the theme is "I am Here for Cerebral Palsy."<br />
On this day to raise awareness I thought I would try to give a picture, put a pin in the map of where we are.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbTKfadS-e7edUANqkpJAvuUy5iH0D8M9OlUIYz4RYfH7XoCouBG0ka4-0up_Uh1hVcm0QG5BFq8z8-iNylGLealpNHG406wVglNo8_qMwlBR7mrWJbxa_N8keACaibFqWMdz5Tbp3VB3C/s1600/IMG_0357+%25281%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbTKfadS-e7edUANqkpJAvuUy5iH0D8M9OlUIYz4RYfH7XoCouBG0ka4-0up_Uh1hVcm0QG5BFq8z8-iNylGLealpNHG406wVglNo8_qMwlBR7mrWJbxa_N8keACaibFqWMdz5Tbp3VB3C/s320/IMG_0357+%25281%2529.jpg" width="240" /></a>This, I'm sure, will sound odd to others, but sometimes I forget Brett has CP. It doesn't define him, but it is a big part of who he is. It makes him unique in the way he moves, holds his body and communicates. But, we have lived with this since he was born 8 years ago and it's just part of who he is. I find myself sometimes in public thinking 'what are they looking at?' or seeing the reaction from a stranger when he screeches with joy and It takes me a minute to remember that most people are unfamiliar with Brett or CP. Part of that is because we have such a loving and accepting community around us. Brett attends his neighborhood school just like his brothers. We have slowly integrated him into a regular education class and he spends a good part of his day there in third grade. Most of the children have known him since kindergarten and he's just one of the boys. He attends his brothers sporting events and participates in community activities and the parents know him and our neighbors know him and our church family knows him. So, I forget.<br />
But, if I'm being honest there are times when being here with Cerebral Palsy infuriates me. It rips my soul into pieces when there are obstacles to overcome and it exhausts me to fight for basics like education and insurance coverage for necessities like food. Because Brett is a triplet, I think some of it is amplified. When his brothers went on their first sleepover at a friends house Brett was invited too. He stayed most of the time, but then, I needed to take him home. Brett occasionally has stomach and reflux spasms that cause dramatic issues in the morning, he needs medicines administered at night and help using the bathroom first thing in the morning. We did our best and Brett was probably more OK with it than me, but it falls into that "life isn't always fair" category and it aches my heart in a way I can barely explain. Here is CP.<br />
Brett has grown a LOT in the last year. At more than 42 pounds he is getting difficult to carry. The growth is a blessing in that it has given him strength, but it also means the day is coming when I may not be able to lift him on my own, without help. Here is CP.<br />
As Brett grows so does his spasticity - he has spastic quad CP, which means he has uncontrollable spastic movement in all four quadrants of his body. He is on the maximum medication to control it and it makes him spacey. Due to other issues related to his CP he doesn't qualify for a surgery that has been life changing in removing spastic movements to many with CP. It leaves us with one option and it involves placing a pump in his body to deliver the medicine directly to the areas that need the help without the neurological effects like spaciness. But it's surgery and it's a foreign object in his body with a load of complications that make me cry every time I read them. It requires more doctor visits for refills and monitoring. As I told the doctors who, as a second opinion, evaluated Brett last year and made the recommendation for the pump - It's not good enough. Go back to your people - your doctors, your researchers, your medical inventors and tell them this will not do! Here is CP.<br />
Brett has four therapies a week and a list of 5 specialists he sees on a regular basis. Here is CP.<br />
We are blessed that Brett is patient and easy going and very accepting of his diagnosis while still working endlessly hard to do the things he sees all of us do with ease every day - sitting up, walking, eating, speaking. He works hard and with humor but nothing comes easy. Here is CP.<br />
So where am I on this World Cerebral Palsy Day? Where is his family? Where is Brett?<br />
We are here fighting. We are here saying 'not good enough'. We are here despite all the obstacles and challenges living a "normal," happy and blessed life.<br />
We are here sandwiched somewhere between acceptance and aggravation.<br />
Sometimes we are here smiling and forgetting and enjoying and sometimes we are here kicking and screaming and crying and angry. But we will not give up until the world right outside our door and across the world is better for Brett and others living with this diagnosis. All is not well with our circumstances, but it is well with my soul. Whether we like it or not - We are Here with and for Cerebral Palsy.<br />
<a href="https://worldcpday.org/wp-content/uploads/2016/09/WorldCPDay_FavouriteWordsPoster_2016.pdf" target="_blank">https://worldcpday.org/wp-content/uploads/2016/09/WorldCPDay_FavouriteWordsPoster_2016.pdf</a>Jodyhttp://www.blogger.com/profile/06227172010714967395noreply@blogger.com0tag:blogger.com,1999:blog-5865750346427988548.post-17155371664499209892015-04-16T20:21:00.001-07:002015-04-19T09:56:14.299-07:00A step forwardSo, this happened today ...<br />
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Brett chose to go in the walking track at Easter Seals during physical therapy. It is one of his favorite things to do. The harness offers full support and is adjustable to fully support his upper body so he can focus on moving his legs.
Here is what it typically looks like and how he started out yesterday:<br />
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This is how he walked most of the way on his return walk down the hall. I was so excited I almost forgot to video and got him at the tail end when he was wearing out, but remarkable nonetheless.<br />
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Look at those strong legs moving unassisted with such fluidity! We celebrated by swinging by Chick-fil-A on the way home and getting a few of Brett's favorites - French fries and lemonade.Jodyhttp://www.blogger.com/profile/06227172010714967395noreply@blogger.com1tag:blogger.com,1999:blog-5865750346427988548.post-14702795110931561452015-03-25T07:28:00.003-07:002015-03-25T08:06:46.710-07:00Brett Can<h2 style="text-align: center;">
<span style="font-size: x-large;">Brett Can!</span></h2>
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Today is Cerebral Palsy Awareness Day. There is so much about CP that I didn’t know until Brett was diagnosed and we are still learning. This year United Cerebral Palsy’s awareness campaign is #CerebralPalsyCan. They have posted videos of what people with CP can do. I’m using that as my jumping off point this year to share with all of you just some of the things Brett can do. So often someone with a disability is looked at for what they can’t do. We, like many parents, are doing what we can to help Brett live a life without limits.</div>
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So, here we go:</div>
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Brett can sit and stand<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghNMsP7M51my2BixPvckobgzlgdnp3SnD1pGJ1DU9zR1kB-ps3NZl8oJsSlURKBUnG-UkcDwds767N8UhfGbNB7BbnYG-JxiZXCTeW8w1WhN9dCUol2ZwBXqj9eDCQrhgoNMwjRHR199tq/s1600/IMG_2379.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghNMsP7M51my2BixPvckobgzlgdnp3SnD1pGJ1DU9zR1kB-ps3NZl8oJsSlURKBUnG-UkcDwds767N8UhfGbNB7BbnYG-JxiZXCTeW8w1WhN9dCUol2ZwBXqj9eDCQrhgoNMwjRHR199tq/s1600/IMG_2379.jpg" height="320" width="240" /></a></div>
<span style="font-size: small; font-weight: normal;">Brett does spend a lot of time in his wheelchair. But, with a little support <span style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 11px;">on good days he can stand for a minute. On his best days he can sit unaided on the floor for almost 15 minutes.</span></span></h3>
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Brett can walk</h3>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfEON12QZ-wbAY5b32IY-c4bxClv2ly3DmwTKMKNUDYgeOBeiYh04bDymioYN-rJR6jHRIieCwU6ur3Fpi0PrqZdIHi9jore__jR2Y9IC0Cqksz5fevg6sTNX92UU1lNYwlLv9feRalEEd/s1600/IMG_4778.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfEON12QZ-wbAY5b32IY-c4bxClv2ly3DmwTKMKNUDYgeOBeiYh04bDymioYN-rJR6jHRIieCwU6ur3Fpi0PrqZdIHi9jore__jR2Y9IC0Cqksz5fevg6sTNX92UU1lNYwlLv9feRalEEd/s1600/IMG_4778.jpg" height="320" width="240" /></a>So, it may not look like walking does for the rest of us, but he is working hard at it. Brett walks with assistance from adults, in a gait trainer and his favorite is the walking track at Easter Seals. He is fully supported at his upper body, but to move those legs he does the work. Brett also can roll across a room like nobody I’ve ever seen to get where and what he is after. </div>
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After several years of frustration that he doesn’t use his power chair to move forward as much as we would like, a few recent adaptations to his positioning and a few items being ordered to further adapt his chair have shown lots of progress in the last month.<br />
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These are all ways Brett can get where he wants to go.</div>
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Brett can talk</h3>
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Brett expresses himself all day long. For those closest to him he doesn’t need a lot of words. He uses a thumbs up for "yes" and crosses his arms and sometimes shakes his head back and forth for "no". If he wants your help he will reach for your arm or hand and pull it toward him. But he also has some words. There is no better sound than when he says Mommy, Daddy or I love you, which he says with more frequency in the mornings. He calls “out” when he wants to get out of bed, can say “all done”, “again” and a favorite is when he really wants you to know something and gives a big “Yaaaa!” He also is having a lot more success using his DynaVox to express himself - it’s a computer he uses to say the things he isn’t able to say with his mouth.</div>
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Brett can be adventurous</h3>
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Brett is a dare devil. Like any parent is scares me to let him try things that are risky. But if we would let the other boys try it and the risk isn’t any greater for Brett we usually take a deep breath and let him go for it.</div>
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Last year he enjoyed tubing on the lake at high speed (I wish it was a video so you could hear the giggles). He loves flying down the hill on a sled and any opportunity to climb or interact with animals (he even loves snakes).</div>
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Brett can participate in all school activities</h3>
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Brett is still splitting his time between a multi-needs class and integrating into a “regular” first grade classroom. But he is exceeding the academic goals set for him this year. Brett can read for enjoyment and comprehension, add and subtract and can tell time, among many other things. He is participating in Tiger Scouts as well.</div>
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Brett can ride a bike</h3>
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Due to the generous donation from a family whose daughter has CP and outgrew her bike Brett was able to begin riding a bike last year. He is just beginning to propel it forward on his own by pushing down the pedals and there is a handle on the back that allows an assistant to push and steer as well. Brett loves to be on his bike, especially when his brothers are out on their various bikes, scooters and big wheels. I wish you could all be here to experience his joy every time he gets on a bike - it really reminds you of the good things in life. (yes, it's pink. But we will be painting it this summer!)</div>
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Brett can participate in sports</h3>
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Brett loves to play football, baseball, tennis - you name it. If it's sports related he wants in. Often that means holding the bat or the glove or the racket with him. Brett has participated in sports with his brothers since he was little. Our park district's special recreation affiliate is always ready to help and will provide an aid for Brett to participate in any program they offer. But we have found Brett really enjoys adaptive sports and plays both Chicago Top Soccer and Buddy Baseball. It is a treat for us as parents because amazing volunteers assist Brett and we get to sit in the stands and cheer him and his teammates on.</div>
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Brett loves to step up. At home he never complains when asked to do chores like dust, sweep and vacuum, which he is able to do with some adaptations. Brett also participates in mission work. Our family recently volunteered to pack food boxes for the Children’s Hunger Fund. Brett packed boxes last year and this year helped fill bags with pasta and label them for families in need right in our neck of the woods. He rocked the hair net and understood the importance of what he was doing.</div>
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Every diagnosis is different and even with Cerebral Palsy there are so many different kinds and degrees. When encountering anyone with a disability please always assume they want to be included - if you aren’t sure how to make that happen ask them or the parent, caregiver or teacher how you can get the person involved. It means the world to those living with cerebral palsy and their loved ones because they CAN do more than you might think!</div>
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Jodyhttp://www.blogger.com/profile/06227172010714967395noreply@blogger.com4tag:blogger.com,1999:blog-5865750346427988548.post-50721447962984511712014-11-13T08:59:00.001-08:002014-11-13T10:24:32.512-08:00Faith through failure<style>
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I'm a never give up type of person and I am trying to teach
my children to have perseverance. That's not to say that I don't let them fail –
I believe there is a lot to be learned from failing. And in some respects
failing and perseverance go hand in hand.</div>
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So after six years of conversations and trying new things
and retrying old things and working with doctors, a nutritionist and a feeding
therapist and Brett still not gaining enough weight it felt like a crushing defeat in
October when his doctor said it's time for a feeding tube and I had nothing
left to battle with - just tears.</div>
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Brett's cerebral palsy impacts his muscles. For him the tongue and jaw are part of that. So eating and drinking that come so naturally to most have been a lot of work for Brett. He has done great and come so far. But the spastic part of his cerebral palsy also means that his body moves involuntarily - all day long. So all the hard work expended to eat burns the little calories he consumes and then his body just works and works burning even more.</div>
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I have talked to my friend who has worked with children with
CP and feeding tubes, I have talked with a mom and nurse whose child had a
feeding tube. I have listened as therapists have assured me that time and again
parents always wish they had done it sooner. </div>
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It is a strange place to be - caught between logically
knowing that you have done everything you could and you are making the right
decision and having it compete so strongly with the emotional response that
screams NO! Try harder. Do more.</div>
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It is that side of me that remembers praying and begging and
coaxing a 4 lb baby to take the smallest amounts of milk so
he could come home from the hospital. We celebrated 13 long days later when the overnight nurse
said he had done it and he did it for me again that day. It's the side of me
that sat with special tools stimulating different parts of his
mouth to build strength. It's the side of me that has sat face to face with
this boy for six years slowly feeding him and praising when he
drank one more ounce or ate just one more spoonful. The side that wants to high five everyone
when Grandma or one of his aunties announces he ate beyond his usual amounts or
actually ate something new. The side that delighted when we finally found a new
food he could process and liked that was good for him and might add meat to his
bones – like peanut butter on crackers. Together with Tate and our family –
Brett's pit crew – so many of us have given time, heart and soul to the pursuit
of packing on the pounds.</div>
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The feeding tube has been brought up many times. My argument
when doctors would say "failure to thrive" was that he was thriving –
he is thriving. Despite the work and the struggles – He. Is. Thriving. </div>
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But he is getting so tall and the rest of him isn't keeping
up. He is in the 50th percentile for height on the CP chart and barely makes it
on the chart for weight. I believe there is a difference between failure to thrive
and failure to grow. But, that’s just semantics. Either way it feels like
failure.</div>
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We had a family weekend away this summer and Peyton was
enjoying taking pictures with my phone. I was so startled when weeks later a
picture of Brett lying on the bed with his shirt off popped up on my computer
screen. He looked skeletal. It scared me.</div>
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So here I am trapped between taking a faithful step forward toward
what feels equal parts right and wrong – relief mixed with defeat.</div>
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After all the wrestling with logic and emotion – no
matter how much research I do and how many prayers I send up – I know it is
time. I know that sometimes failure and defeat can lead to good, productive, life changing places.</div>
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My prayer is that all the words of encouragement I have
received will one day prompt a post that does say - 'I wish we had done it sooner.'</div>
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I pray that Brett will grow stronger and have the ability to
do or try more. I pray that Brett getting regular doses of his medications
through the tube will result in him feeling better more consistently. I pray
that it will result in the removal of mealtime struggles and stresses replaced
with time to play and more joy.</div>
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I pray and trust that six years of effort only to end up in
the same place will results in something better than what I can imagine</div>
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I pray for the day I will say what looked like failure ended up as victory.</div>
Jodyhttp://www.blogger.com/profile/06227172010714967395noreply@blogger.com0tag:blogger.com,1999:blog-5865750346427988548.post-84840194153647129522014-09-30T20:42:00.000-07:002014-10-01T07:30:55.135-07:00What I want you to know about CPToday, Oct. 1, is World Cerebral Palsy Day. This year I decided to write about some things about cerebral palsy that I wish more people knew, understood or thought about. It's been quite an education for us and I try to pass along what I know to others so they can be more understanding.<br />
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Cerebral Palsy is like snowflakes - no two are the same.<br />
I still have to remind myself of this one from time to time. It's so easy to get caught up comparing Brett to others with the same diagnosis. Some cases are very mild and barely noticeable - a hitch in their walk or a slight curling of a hand. It can impact just one side of the body, just the upper half, just the lower portion or all of the body. It also has varying degrees of severity. Brett's effects all four limbs. He also has spasticity - meaning his muscles spasm involuntarily. So his type of CP is considered spastic quad and his is severe. (see infographic below)<br />
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How is it treated?<br />
There is no cure for CP ... yet. CP is essentially a brain injury. What can be done at this point is controlling the symptoms through medications, therapies and surgeries. Through repetition of tasks -improving muscle memory and motor planning - Brett has progressed in a lot of areas. Medications help relieve some of the spasticity taking away some of the pain and controlling movement.<br />
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How do I interact with someone with CP?<br />
Just like you would anyone else. Don't be afraid and above all - assume intelligence. Though CP is a brain injury, for many it only impacts the way their body moves and operates. Their thoughts and intelligence are fully intact. Yes, there can be people with CP who also have intellectual disabilities or delays. But assume they know as much (if not more) than others their age until you learn otherwise.<br />
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If you don't know - ask<br />
Kids are great about this. They will blurt out all kinds of questions because they are curious. I wish we as adults were more like that. I never mind a respectful question. Even if it's clumsy I still appreciate it if asked from a place of kindness. What's your diagnosis? Are you able to ...? Can I help you with...? What is that like? If you have a question ask it here in the comments. I'll do my best to answer.<br />
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They don't need pity<br />
I get it. Your heart aches to see another person struggle or in pain. But there is a difference between compassion and sympathy. Brett's life is hard, but it's not sad. It can be frustrating for him, but so can life for anyone. People have asked me if it makes me sad. It doesn't. Yes, sometimes I grieve. I grieve when Brett is surrounded by kids and they are running and he is left behind. I grieve when his disability doesn't allow him to do something he would love - like go on a roller coaster - and I can't work out a way to even the playing field for him. But on a regular basis there is no sorrow. Brett is such a funny, happy boy. He is good at so many things and is surrounded by people who fiercely love and advocate for him. Don't assume someone's life is not good because they have CP or another disability.<br />
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Ask first before helping<br />
This is my biggest struggle as a parent. I help all of my boys too much. Tying shoes when they can themselves. Opening snacks when they are perfectly capable. There is a lot Brett needs help with but don't assume he wants you to do it for him. I see it most when he is struggling to use his communication device. I want to jump in and help and make his life easier. But if I ask or his therapist says "can I help?" Nine times out of 10 his answer is 'no.' If he could say it I swear he would shout "I can do it myself!" even when he can't he would rather try and continue to fail than have someone else do it. There is a difference between helping someone and doing it for them. Ask first and respect their answer.<br />
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Here is an info graphic from last year I found helpful:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO9BbuZ1xy5C-zRtIl7aVJKSzyzF-RGYlqx2FCW6aog-YNmiFgGoOkYX8D40V85cKxag0sSY6m7Lli64Qa4E3KYBTCNBEFJGDAIBuMnhhCA2_neA40LR1Mqlh1eZQCDZ3XuqAvoQNaIX9R/s1600/446268dc067431fef87f34c865477d9f.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO9BbuZ1xy5C-zRtIl7aVJKSzyzF-RGYlqx2FCW6aog-YNmiFgGoOkYX8D40V85cKxag0sSY6m7Lli64Qa4E3KYBTCNBEFJGDAIBuMnhhCA2_neA40LR1Mqlh1eZQCDZ3XuqAvoQNaIX9R/s1600/446268dc067431fef87f34c865477d9f.jpg" height="640" width="441" /></a></div>
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Brett's Motor type is mixed, quadriplegia, GMFCS level V progressing toward level IV.Jodyhttp://www.blogger.com/profile/06227172010714967395noreply@blogger.com0tag:blogger.com,1999:blog-5865750346427988548.post-22208099213680161142014-05-12T09:06:00.000-07:002014-05-12T09:06:44.534-07:00I have something to say<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">Several weeks ago as we were leaving Grandma & Granddad's house Granddad gave Brett a kiss on the forehead and said "I love you, buddy."</span></div>
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<span style="letter-spacing: 0.0px;">And Brett responded "I love you too." </span></div>
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<span style="letter-spacing: 0.0px;">I was holding him and almost dropped him. Tears sprang to my eyes and I looked at Granddad – he had heard it too! A miracle moment.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">Part of Brett's Cerebral Palsy diagnosis is that he is "non-verbal." Mostly he lacks the trunk strength and coordination to do a lot of the breathing involved with talking. Lately he is making a lot of sounds. Trying to communicate with his words, but we often can't understand him.</span></div>
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<span style="letter-spacing: 0.0px;">He has some words he uses regularly. He will answer "ya" responding to some questions. He can say "Momma" and "Daddy" – and I assure you there are few sweeter sounds. He often calls "out" or "all done" from his bed in the morning (sometimes around 4 or 5 a.m.) and he often says "I like it" with varying degrees of clarity. Sometimes we will hear a word or phrase, like "I love you too" as clear as day and then not hear it again for months or ever.</span></div>
<span style="font-size: 12px; letter-spacing: 0px;">Brett can't use his voice to tell you he's hungry and when he's crying he isn't able to use his voice to tell us things like "my tummy hurts" or "my leg braces are bothering me" or "this shirt is scratchy." There are times when he desperately wants me to know something and I can't figure it out and he is frustrated to tears and I've </span><span style="font-size: 12px;">been in</span><span style="font-size: 12px; letter-spacing: 0px;"> tears while my heart aches to know what he wants to tell me and the world.</span><br />
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<span style="letter-spacing: 0.0px;">So we aren't ok with Brett not having a voice.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">I often tell people "just because he can't speak does not mean he doesn't have anything to say." Unfortunately, people correlate his lack of language for a lack of intelligence. In Brett's case he completely comprehends what you say and what's going on around him. He knows his numbers and letters, letter sounds and sight words just like other kindergarten students. But communicating all of that is a challenge – for Brett and for those he wants to communicate with.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">Since Brett was little we have introduced a variety of methods for Brett to "speak" or participate in conversation. I am grateful for my friend Jana whose background as a speech pathologist opened my eyes early to the options and assured me he wasn't too young to give them a try.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">Brett has a Big Mac switch and some smaller block switches. They are essentially buttons you can use to record single messages and he can activate the switch to speak. He has used them to tell people happy birthday, say trick or treat on Halloween, to bring home messages about what he did at school and to help read a line from a book. He has a switch that allows up to three messages and is most often used for him to participate in our bedtime routine to say Amen after a prayer and then goodnight to his brothers. He uses some basic body language to communicate. A thumbs up for yes and arms/hands crossed for no.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">Since Brett was three he has been working with several AAC devices. He uses a PODD book, which uses a series of Boardmaker pictures to give him choices of things to say. He also uses a communication device - a computer that allows him choices of things to say. </span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">Progress is slow. </span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">Because of his physical issues Brett doesn't yet have the accuracy to quickly touch a screen to say what he wants. So he has two switches or buttons. One at his elbow and one by his hand. He uses his elbow and a little speaker by his head to listen to the choices of what he wants to say and when he gets to the right one he presses another switch with his hand to make the device say it. Sometimes, especially when he is excited, his body gets away from him and his elbow will hit the switch going right past what he wanted to say. It can sometimes take up to five minutes for him to communicate a single thought. It can be both mentally and physically exhausting for him and a test of patience for the person he is communicating with. But he has made a lot of progress and does a great job with it when he is motivated to say something. We are waiting to hear whether insurance will approve a new more dynamic device for him to use as his old one is outdated and doesn't offer enough options for him.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">Brett had another breakthrough a few weeks ago at assistive tech therapy when he used his device and a PODD to ask a question about something that was going on in the hallway. It was the first time he initiated a question and we were so excited!</span></div>
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<span style="letter-spacing: 0.0px;">I tell you all of this for several reasons: 1. To offer a better glimpse into Brett and how he communicates. 2. To encourage others to investigate the many communication options. </span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">May is Better Speech & Hearing month. If you know someone with a young child who is concerned about their speech or hearing please encourage them to visit identifythesigns.org – there is so much today that is treatable and so many solutions available.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">It also doesn't have to be a child. These communication options can be used at any age and are being used by adults with ALS, dementia and a variety of diagnosis. </span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">My career is in communications and I can't imagine not having the opportunity to say what is on your mind. I look forward to the day when Brett's abilities and the technology come together to the point where he can say anything he wants to anyone who will listen.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0px;">Until then we will celebrate all the special moments. I asked each of the boys to record a Mother's Day message to Grammy who lives out of state. On Brett's turn I set</span><span style="letter-spacing: 0px;"> him on the couch and told him when I started the video he needed to say "Happy Mother's Day" to Grammy. I was expecting him to use his Big Mack switch. Listen closely to the beginning of the video - amazing!</span></div>
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Jodyhttp://www.blogger.com/profile/06227172010714967395noreply@blogger.com4tag:blogger.com,1999:blog-5865750346427988548.post-78962631806391452252014-05-12T08:02:00.000-07:002014-05-12T08:02:21.396-07:00Casting, braces and Botox<div style="font-size: 12px;">
<span style="letter-spacing: 0px;">Brett has the cutest feet.</span><span style="letter-spacing: 0px;"> </span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">I am not a foot person. When I have had the opportunity to get a pedicure I’ve always whispered a prayer of thanks that they are willing to do that job. I’m cringing thinking about it as I write.</span></div>
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<span style="letter-spacing: 0.0px;">In several respects Brett would make many dancers jealous. His toes are perpetually pointed with a beautiful arch. My dancer days are a distant memory, but we did exercises and all manner of hard work to get what he has. He also has scissoring legs. Not great for every day use, but if you lift him off his feet when he is excited he rivals every ballet dancer I’ve ever seen doing an entrechat where the legs criss cross rapidly in the air.</span></div>
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<span style="letter-spacing: 0.0px;">But, alas, he is not trying out for Swan Lake at the moment so the toe pointing and leg scissoring are a challenge. Most of it comes from the high tone in his legs.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">So, shortly after the start of school Brett underwent serial casting. The idea was that he would be casted in a foot flexed position. Every two weeks new casts would be done and the flexion would increase. I waited until summer was over and he was in the swing of things at school. But just as he got his casts on we had a heat wave of 100+ temps. I’m sure he was sweating in them, but he fussed the first day/night a bit and then never again complained. </span></div>
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<span style="font-size: 12px; text-align: start;">To our surprise he was only casted once. The orthopedist said in the one casting he had gained as much flexion as we could expect. I could tell the difference immediately. This has helped with his walking and leg positioning. It also helped him with his new AFO (ankle, foot orthotics) or leg braces that he wears daily. He had trouble with his last pair because his strong arch was pulling his foot out of them and making them uncomfortable for him to wear. He cannot work on walking flat footed without the braces. So after he came out of the casts he was able to get new braces as well.</span></div>
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<span style="letter-spacing: 0.0px;">Shortly after that he was on to the next thing – Botox injections. I know! I remember hearing about it from another parent when Brett was small and being somewhat horrified. But I asked around and did research and after quite a bit of hesitation on my part decided he should give it a try. They gave him two ultrasound guided injections in the abductor muscles in both legs. The idea is to loosen up the muscles so he isn’t too tight. Part of Brett’s spastic quad CP means that his muscles are as tight as drums. Medications help some, but as he grows the spasticity becomes more intense. To offer some examples sometimes he is so tight when he is on his back on the floor I can’t bend his knee or hip flexor to bring his leg toward his chest or do bicycle motions. Some days I cannot get him to bend at the waist to seat him in his wheelchair or his car seat. He is like an unbendable plank. He has always had this issue, but when he was tiny it was easier to maneuver him into the positions. Now that he is almost 4 feet tall and strong as an ox it is very challenging and sometimes dangerous to hold and position him at the same time.</span></div>
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<span style="letter-spacing: 0.0px;">I was really skeptical. But it worked. </span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">He was able to relax enough to be able to do things he never could before. At Halloween he sat on a stair unaided and showed off his pumpkin. Besides being adorable he was able to sit unaided because his body was relaxed. You might also notice his bare feet are flat on the floor!</span></div>
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<span style="letter-spacing: 0.0px;">He has always been able to sit criss cross apple sauce on the floor for seconds at a time. After the Botox I positioned him in criss cross during Sunday school and there he sat for almost 15 minutes. Righting his body when needing to and only tipping over when he lost his balance. He was better able to pull his legs forward in assisted walking. A bonus was that he was using his hands so much better. Because he wasn’t working so hard on his legs he could focus on other areas. He was holding his spoon, opening drawers and really perfected isolating his pointer finger for use on the iPad. His thumbs up indicating “yes” became more pronounced. He was able to work on a new sign for “no” crossing his hands.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">And then it was gone. I could tell you to the day when it had fully worn off just before Christmas. I was fighting his body to get him in his car seat and was thinking – why is this so hard? And then I realized.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">He is able to tell me that his muscles hurt more now that the Botox has worn off. It’s like in the cartoons when someone is granted a wish or turned into something, but then the magic wears off and they are back to themselves. The magic has worn off.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">But the good news outweighs the bad news. </span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">The good news is that he has retained some of the skills – the thumbs up and pointer finger are so good and I assure you the “no” is here to stay. Though he can’t maintain it as long, his independent sitting in criss cross applesauce is better.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">Though he can get the injections every three months the only doctor I trust to do it is on medical leave so it will be awhile before he gets it again.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">The bad news is that eventually it will stop working. For most, as if there is an immunity built up, he will someday no longer respond to the treatment. I don’t know when that will be so for now we are hanging on to the good stuff.</span></div>
<div style="font-size: 12px;">
<span style="letter-spacing: 0.0px;">For those of you who don’t have children with physical disabilities I know this all seems strange. Sometimes having a child with special needs can make me feel like we are living part of our lives in an alternate universe and – in a way – we are. Casting and Botox on a five year old would have seemed strange and admittedly may have seemed a little bit like torture if I didn’t live in this world.</span></div>
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<span style="letter-spacing: 0.0px;">But from where we live I am adding both serial casting and Botox to my list of Bizarre Things I am Thankful For.</span></div>
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<div class="MsoNormal">
As a parent of a child with Cerebral Palsy it can sometimes
feel daunting – the letters, meetings, research, appointments, arrangements and
conversations that need to take place so Brett has the same opportunities
available to him as his brothers and peers. From big things like integrating
into a classroom and making sure there is playground equipment he can use to
little things like keeping up on the latest studies and research on CP – the
list never shortens. We take time to celebrate every little victory, but then
use that energy to move on to the next challenge.
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When I feel exhausted or defeated, as I sometimes do, I stop
and remember that I’m picking up where others left off. It’s my turn to carry
the torch for a while because there will be another child right behind Brett
and I want their lives to be better and easier.</div>
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<div class="MsoNormal">
It still shocks me to think that it was within my lifetime
that people with Cerebral Palsy were institutionalized and marginalized (and
sometimes still are). I think of what it must have taken to change that. When I
was in school the children with special needs were seen in passing in the
halls, but had their own classrooms. Someone looked up and out and said ‘I need
a mountain moved’ – and I am so grateful – they have moved – even if just
an inch.</div>
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On this day of spreading CP awareness I want to introduce you to some of the mountain movers I know:</div>
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I am privileged to know a young woman named Hannah who we
met where Brett gets his therapy at Easter Seals. Much like him she drives a
power wheelchair and uses a communication device. She is a college graduate
with an enviable job and a strong faith. She lives independently in an apartment with help from an
aide. She went parasailing on a vacation recently. She has been a friend to me
and my children and a source of motivation to us all. Probably without knowing
it she offers me a vision of what life can be like for Brett. She constantly
has me rearranging my view, seeing the world as a better place for Brett each
time.</div>
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<div class="MsoNormal">
I know a woman, Amy, who works where Brett gets his therapy.
She was the first adult with CP that I got to know after Brett’s diagnosis. She
probably doesn’t know this, but she made it all seem so less scary. We are
there on different days so we don’t see her too often, but when we do Brett
shrieks with delight. If he hears her voice down the hall he will fuss until he
sees her. He even cried once recently when I said he had to say good-bye to her
because it was time for therapy. She offers her time to camps and her alma
maters to talk about CP and spread awareness. She says things to Brett like “I
know buddy some of those things are a little harder for us aren’t they?” People
are drawn to her – she is beautiful inside and out. But Brett is drawn to her
on a whole other level – she gets him. I appreciate the positive messages
and awareness she is spreading about CP.</div>
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I met another mom, Susie, earlier this year. Her
daughter has cerebral palsy too and many medical issues – she has been
integrated in a regular classroom since kindergarten and is now taking college
courses. The road was difficult and exhausting, but they carved out a path
where I can start with Brett that’s a little less bumpy and she has come along
side us on the journey and is walking with us and gives me courage and wisdom.</div>
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I know a couple, Katrina and Joel, with triplets plus one.
Four beautiful children and three of them have cerebral palsy. They are a joy
to spend time with, a blessing in our lives. They are sending their children to
conductive education. A rehabilitation through learning program that pushes
children to reach their potential for independence. It is not close to their
home but they have rearranged their lives to offer their children an
alternative opportunity. Both the parents and their children are a shining
example to me of Philippians 4:13 being lived out daily.</div>
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“We can do all things through Christ who gives me strength.”</div>
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I met a mom, Kris, whose son with cerebral palsy is just a
little older than Brett. They live just across town from us and have three boys
– including twins – so she gets it. She always seems to be a few steps ahead of
me in advocacy, research and equipment. In addition to being a great friend she
is a great resource and a woman of exceptional strength and courage. Last month
she took her son to St. Louis for a surgery that I know was scary, but holds
promise for her son to have a life with less pain and more possibility. I am
watching closely as his amazing story continues to unfold. It is opening my
eyes to the possibility of a different future for Brett. And, if nothing else,
it fills me with immense hope.</div>
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These are just some of the stories. These are just the ones
that have intersected our lives lately. But I know that every possibility that
is out there for Brett did not come without a parent, teacher, therapist or
other loved one behind them fighting the good fight.</div>
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To all of them on World Cerebral Palsy Day I offer my humble
and sincere thanks for going before us and coming alongside us in the world and
making it a better place than it once was. I am grateful for the examples of
courage and strength giving me the motivation so I too can go charging forward
and, God willing, make life a little easier for someone else.</div>
Jodyhttp://www.blogger.com/profile/06227172010714967395noreply@blogger.com3tag:blogger.com,1999:blog-5865750346427988548.post-36387892933671565602013-06-04T14:04:00.003-07:002013-06-04T14:04:37.733-07:00An IEP, a prayer and a mountain moved<style>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRUjZaitcpua0TsQifT9kkZHs4LTPp70pNMfy1F_eJ7Lz3o_UjLlZnZ2Iu44ka3MZY3NIbpzW3w02G3CWtsvy3wuDzvvHEiBSHoeaQZoQyexWcDvgT6PHkgbIzeDDL3jCD_x_ZDfJlJLDV/s1600/B-grad.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRUjZaitcpua0TsQifT9kkZHs4LTPp70pNMfy1F_eJ7Lz3o_UjLlZnZ2Iu44ka3MZY3NIbpzW3w02G3CWtsvy3wuDzvvHEiBSHoeaQZoQyexWcDvgT6PHkgbIzeDDL3jCD_x_ZDfJlJLDV/s1600/B-grad.JPG" /></a> Brett's last day of preschool<br />
<br />
When Brett was 3 he was evaluated by the
school district for his preschool placement. After more than an hour in a room full of
strangers from therapists to psychologists all making requests of him I didn’t
feel like they saw Brett’s true abilities. Before we even left the room they
suggested Brett be placed in a multi-needs classroom (a separate class for children with multiple issues and a variety of diagnosis). Mama bear took over - I
wasn’t happy. Brett <i>will</i> be integrated in a regular preschool class I told them. They recommended we visit
the multi-needs classroom before making a decision.<br />
I told Tate we were in for
a fight.
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But then we visited the classroom and despite all my
preconceived ideas and principles we were so impressed and Tate and I both left
there convinced it was the right place for Brett and we still believe that two
years later.</div>
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But last month a few week’s before Brett’s scheduled IEP
meeting (an Individual Education Plan that creates goals and details of needs) a
strange thing happened. I told Tate I felt God kept putting the idea of
integration in my path. We had planned to just move along happy with multi-needs,
but everywhere I turned I was reading about integration and meeting new people
who were telling me their experiences, it just kept coming. I told Tate I just
can’t ignore it so I’m going to explore it. I met with a mom whose daughter,
with Cerebral Palsy similar to Brett’s, had been integrated from kindergarten
all through high school. She was amazing. She had a whole box of resources and
coached me on some things to say and not to say in an IEP. More than anything,
though, she listened and encouraged. I felt so grateful for all those who have
gone before us blazing a path not traveled before. I left there feeling empowered.
I talked to Tate and e-mailed the school district/special education program
about our desires to integrate Brett in kindergarten – and I prayed. I felt
like I was following a lead that wasn’t my own, which put me way outside my comfort zone. </div>
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For those who haven’t been through it, IEP meetings are
stressful. You come to the table with the child’s team. The idea is the parents
and child are part of that team. But it’s just you and about six or seven
people from the school district and it can be intimidating. Since Brett was 2
and I started researching schools, programs etc. I have read and heard
countless stories of bad IEP meetings with major disagreements, advocates and lawyers.
Those seem to be the norm. So Tate and I did our homework, we proposed goals of
our own and made numerous pros and cons lists for a variety of integration
scenarios. We were realistic about the limitations beyond our control like
distance between schools and multiple bus trips. I prayed someone else might
offer a solution we couldn’t see.</div>
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We braced ourselves and went in prepared for battle.</div>
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But when we got in the room I was reminded that we <i>are</i> a
team. Except for one new district official, everyone at the table was someone
who has been helping Brett for two years. We traded stories and ideas and the tension
melted. At the end of the goal setting we had gotten everything we wanted and
more. We realized what an advocate Brett has in his speech therapist.</div>
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When it came to talking about transitioning to kindergarten
the program director asked what we wanted. I told her our pie in the sky
version – Brett safe and comfortable in his multi-needs program part of the day
and then integrated into our neighborhood school with his brothers the second
part of the day. Dipping our toes in the water. But the two schools are on
opposite sides of town.
We were concerned about the additional disruption, especially to his lunch, which
is a challenge for all involved. But they said 'if that is what you want, we can do it.' We threw out a few more scenarios and then asked everyone around the
table to give their honest opinions or new ideas. We landed on what we knew was
best for Brett – staying at his current school for both multi-needs and
integration. They suggested we take time and discuss it privately, come back
with any more questions and then let them know when we had decided. We talked
and prayed and slept on it for a few days. We felt at peace with the choice
and signed off on it.</div>
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I said a prayer of thanks that we have options, things had
gone so smoothly and it was over. But, I know Jesus knew my heart was disappointed
that Brett still wouldn’t be in school with his brothers. </div>
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Fast forward about four weeks. I received a call from the
special education program administrator. </div>
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“You’re not going to believe it,” she said and I held my
breath thinking, 'what now?'</div>
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“They are moving the kindergarten multi-needs classroom to
your neighborhood school. Brett will be able to attend that class and integrate
at his neighborhood school with his brothers.”</div>
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I choked up, I couldn’t respond. I was floored – I still am.
I immediately called Tate and we shared our shock and celebration.</div>
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I was still crying when I hung up the phone and couldn’t
stop saying prayers of thanks. I immediately thought of Matthew 17:20 and am
reminded, as I have been so many times in the five years since the boys were
born, that even when my faith feels small - pray God-sized prayers. Nothing is
impossible through Him.<br />
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<a href="http://biblehub.com/niv/matthew/17.htm">Matthew
17:20 (NIV)</a><br />
He replied, "Because you have so little faith. Truly I tell you, if you
have faith as small as a mustard seed, you can say to this mountain, 'Move from
here to there,' and it will move. Nothing will be impossible for you."</div>
Jodyhttp://www.blogger.com/profile/06227172010714967395noreply@blogger.com0tag:blogger.com,1999:blog-5865750346427988548.post-17408368055547784352013-05-29T07:53:00.000-07:002013-05-29T07:58:27.336-07:00Kicking milestones to the curbWhen the boys were little I had one of those books about milestones and what to expect from birth to age 3. As a new mom I kept checking it and working on things and sighing with relief when things matched up. But at a certain point when more and more of those milestones weren't being met by all our boys it became a source of discouragement and disappointment. I remember sitting on the floor trying not to cry, praying and realizing - he will have his own milestones. The book went in the garbage and Brett <i>has</i> had his own milestones. Milestones you won't find in any book. I will forever remember the therapy session when he was 2 and matched all the baby animals to the correct mommy animals. It was the first real sign for me that he was really understanding and learning right along with his brothers. I remember when he started grabbing at my arm to get my attention, last year he mastered the thumbs up to answer 'yes' to questions. They are different, but they are amazing and they fuel my soul and give us hope. I think in some ways we are fortunate that we have the opportunity to really hone in on things most people take for granted and celebrate them with such joy.<br />
I was fortunate enough to catch this on video and I'm continually grateful for people like his physical therapist Miss Elizabeth who believes in Brett and constantly cheers us on. So, after a physical therapy session packed with hard work Brett blew me away - again.<br />
Watch, wait for it and celebrate with us - I think you'll get a kick out of it. David Beckham is retiring just in time.<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyAtfI5qGpPzwU36l2O-cpOZa2mTpnN2x9HN7Kzf6VowCMsCzxIIuwDVc4e2o0Vn5AzGS_J7Dqy01vhVk5BMQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Jodyhttp://www.blogger.com/profile/06227172010714967395noreply@blogger.com1tag:blogger.com,1999:blog-5865750346427988548.post-59841855483591264422013-03-27T18:41:00.000-07:002013-05-29T07:13:39.371-07:00Progress<br />
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Last year for National Cerebral Palsy Awareness Day I wrote about what Brett is capable of. I received so many great responses and heard from so many people, even those close to us, that didn’t know some of what Brett can do or is working on. So this year I thought I would do a quick update on some of the amazing progress he is making.</div>
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Here are some of the things Brett is doing more recently that I love:</div>
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<span style="mso-ascii-font-family: Cambria; mso-bidi-font-family: Cambria; mso-fareast-font-family: Cambria; mso-hansi-font-family: Cambria;"><span style="mso-list: Ignore;">-<span style="font-family: 'Times New Roman'; font-size: 7pt;"> </span></span></span>He is moving around. It used to be I would put him on the ground and there he would stay until I returned. Or he would accidentally flip on his back and fuss because he didn’t want to be there. But this last year Brett is on the move. I set him down in one spot and give him a toy and I can come back minutes later and he will be on the opposite side of the room with another toy. I know this is going to sound funny, but I don’t really know how exactly he gets there. He doesn’t crawl … he swims. Sometimes he rolls, but sometimes he just kicks and kicks his legs and flaps his arms and somehow he propels forward. I give the credit to his new chair. I really think since he received his power chair in August he has a better understanding of his surroundings and that he can get from point A to point B.</div>
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- He is getting what he wants. No, we aren’t spoiling him (OK, maybe a little). He is making much more of an effort to get the things he wants. He’s in his chair and he dropped his toy and I’m not getting there fast enough. He will wiggle out of his straps and lounge to try to get it. More recently I started leaving him in his chair next to the drawers in the kitchen. I silently nudged Tate the other day and we watched as he wrapped his hand around the handle, pulled the drawer open, reached in and grabbed a straw out of the drawer. I’m not sure who was more delighted us, or him! Tate and I have both learned that you have to be careful not to leave anything within his reach you don’t want him to have. It used to be it would just sit there and he would just sit there and no problem. But not anymore! I left a piece of cake within his reach today and turned to talk to someone - and he was hungry, and it’s cake. He grabbed it to pull it toward him and dumped it. I was never so glad to see food on the floor. Tate left a mug of hot chocolate near him – I’m guessing it smelled good. Chocolate and glass all over the floor (and thankfully nobody was burned). But he is motivated!!<br />
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<span style="mso-ascii-font-family: Cambria; mso-bidi-font-family: Cambria; mso-fareast-font-family: Cambria; mso-hansi-font-family: Cambria;"><span style="mso-list: Ignore;">-<span style="font-family: 'Times New Roman'; font-size: 7pt;"> </span></span></span>He says “Yeah” quite a bit. I remember my mom used to say “say yes, not yeah” but I’ll take yeah any time. He also uses a thumbs up sign to say yes and sometimes it’s like saying “me too”. When I get Brett out of bed every morning and say “I love you Brett” that little thumb goes up and I sometime say “you love me too?” and I get the “yeah”. Those are the days when you can actually see me float.</div>
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<span style="mso-ascii-font-family: Cambria; mso-bidi-font-family: Cambria; mso-fareast-font-family: Cambria; mso-hansi-font-family: Cambria;"><span style="mso-list: Ignore;">-<span style="font-family: 'Times New Roman'; font-size: 7pt;"> </span></span></span>He’s driving – backwards. When Brett was trialing the power chair we found that pulling the joystick toward his body was a more natural movement and they switched it so pulling back drove him forward. But his wise therapists quickly told me that that is just encouraging the patterns we are working so hard to break. We are trying to teach him to extend his arms away from his body to reach and play and so we switched it back. It’s been that way for about two months and all I can say is it’ll be a long road. But, in the meantime, Mater from the movie Cars has nothing on Brett. He’s the best backward driver in the world!”</div>
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<span style="mso-ascii-font-family: Cambria; mso-bidi-font-family: Cambria; mso-fareast-font-family: Cambria; mso-hansi-font-family: Cambria;"><span style="mso-list: Ignore;">-<span style="font-family: 'Times New Roman'; font-size: 7pt;"> </span></span></span>He’s potty training! He’s been ready for a long time. I think the truth is I’ve been avoiding it. I thought we would start out with<span style="mso-spacerun: yes;"> </span>working on a few things while he is on spring break. Two days in and he has had a lot of success. We were both exhausted after the first day – but I am so proud. The communication piece is still a puzzle and I think if we can come up with a word he can consistently speak he would be staying dry. But I’m not always in the same room with him and I’m missing some of his hand signals. Once again he is way ahead of me!</div>
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Jodyhttp://www.blogger.com/profile/06227172010714967395noreply@blogger.com0tag:blogger.com,1999:blog-5865750346427988548.post-30362140527437362982012-10-21T20:36:00.000-07:002012-10-21T20:38:37.083-07:00Making stridesBrett is continuing to work on driving his new wheelchair (as are his parents, therapists and teachers!) But I wanted to share this...<br />
A year ago we were celebrating when Brett began moving his legs independent of one another in the pool during swim therapy. He has high tone in his legs. It is like if you stiffened every muscle in your legs with all your might. For the first few years of his life he was so tight all the time his legs were practically plastered together. He still gets that way, but muscle relaxing medication and lots of work in therapy and in the pool have gotten his legs moving.<br />
So, this summer Easter Seals - where he gets his therapy - got a new system that involves a harness attached to a track that goes all the way down the hallway. I've watched children and adults who are in wheelchairs get hooked up to the harness and their faces are overjoyed to be standing and walking down a hallway.<br />
This is Brett's first try at the new system last week. He gets some assist on his left leg, but his right is moving on its own. It is amazing to see and though it is very hard work for him - he couldn't wait to try it again this week.<br />
I also love that his brothers like to help by being on standby and adjusting the harness when requested.<br />
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<br />Jodyhttp://www.blogger.com/profile/06227172010714967395noreply@blogger.com0tag:blogger.com,1999:blog-5865750346427988548.post-41226488055189173162012-09-13T19:48:00.000-07:002012-09-18T20:17:25.445-07:00It's here!<div class="separator" style="clear: both; text-align: center;">
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The day finally arrived Sept. 12. Tate and I took Brett to Shriner's Hospital where he received his power wheelchair. What an amazing day! Brett was so excited. I wish all of you could have been there to experience such pure joy.<br />
Before I go on to tell you more about the experience of getting the chair, I want to take this opportunity to say thank you and how inadequate that seems. If you are reading this that means you supported the effort to get this chair through prayer, your financial support or your gift of talent and time to raise money to make it a reality. Tate and I have been truly humbled by the outpouring of care and generosity. You have given Brett an opportunity to be independent in a way he cannot otherwise experience. When he got home in his chair yesterday I called him to the dinner table ... and he came. Brett has always had to be brought into the room, carried or pushed in a chair but yesterday he entered the room by choice, on his own, and my heat was overwhelmed with gratitude to God and so many people.<br />
You haven't just given Brett a gift, it will be a benefit to so many others in so many ways. Accepting help and asking for money has been one of the hardest things we have ever done, but knowing that Brett's chair was given by the body of Christ will always make it that much more special. Thank you.<br />
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So, it took two hours for the fitting - making sure all the belts and straps were properly adjusted, making sure the driving controls were in the right position for him to access. With the exception of about 5 minutes of fussing Brett just sat in that chair watching Ron (aka the wheelchair guy) using wrenches and screwdrivers and drills to move and maneuver bits and pieces.<br />
The best part was that the driving controls were, for the most part, out of Brett's sight for the first part of the fitting. But the second Ron put them down and Brett saw the console light up - so did his face and he kept reaching for the joystick - he had such ants in his pants to get the chair moving!<br />
We took the chair for a test spin. Brett trialed this chair once a month over about six months ending in December 2011 before we decided it was a good fit. He hasn't been in a power chair in 9 months as we waited for paperwork and insurance and the chair to arrive. He drove the chair better during the fitting that he had in all the trials combined! Here's Brett driving on the front lawn just after getting it home.<br />
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When we got home his brothers Jackson and Peyton hid in the kitchen so Brett could drive into the house and show it off. He was so excited and proud and the boys were so impressed.<br />
Here they are discovering some of the bells and whistles (actually there is a horn on the chair!):<br />
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<span id="goog_985009712"></span><span id="goog_985009713"></span>Having one of our 4 year olds as a driver is both exciting and frightening! We ask for continued prayers as Brett learns to drive the chair and for our patience as we help him and for the safety of all those in his path! Please check back to the blog as we hope to update it from time to time.<br />
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With hearts overflowing with gratitude ... Brett and the Paige family<br />
<br />Jodyhttp://www.blogger.com/profile/06227172010714967395noreply@blogger.com2