We said we didn't want to do it. Our pride, our independence has kept us from asking for donations. Many friends and family have given to Roa's fight through the years and we THANK YOU!
But, Roa has a chance to partake in an intense therapy program this summer. The method is one that I have talked of before. One that we tried for a brief time- Anat Baniel Method (ABM). The program is pricey. Insurance doesn't cover the cost because it is still considered experimental/alternative in nature. We are looking to raise around $1200 to cover the cost of one weeks worth of sessions.
If you can find it in you heart... have a little extra in your pocketbook this month... please consider donating to Roa's fight.
I have added a donations button to the right of this post. It is through Paypal. Safe donations and a chance to send Roa and family an encouraging note.
Thank you Roa's Angels for your time, prayers, and cares. ~ Jen and Bryan
Wednesday, May 23, 2012
Tuesday, May 22, 2012
Questions
Will there ever be a time when we get to say, "well, that does it! Enough. Finished. As good as it gets. Over."
When it comes to therapies, methods, trials, products, devices, equipment. Will we ever just get to say, "This is it! Answer found. Problems solved."?
Some day, will I get to fall asleep thinking of tomorrow with anticipation of a bright new day? Or will it continue to be a clock ticking away, Calendar whipping thru pages. Minutes that count so much when there is only so much time in a day to find that cure?
Will I ever watch typical children and not mentally process their every move with awe of God's perfect creations? Muddied by God's little mistakes?
Does the guilt go away? The guilt of not being parent enough? Not being wealthy enough? Not being driven enough to find what my child needs?
These are questions I have tonight as I gaze out the glass prison window of CP Land White Bear Lake. We are trapped here. With so many doubts. So many fears. So much hurt. And so many questions we will continue to have while other parents get to enter blissful sleep in the land of the Cerebral Strong.
Thursday, May 17, 2012
updates
I had some trouble saving and posting on the blog in the past few weeks. Sorry for the delay. Time for an update.
Roa has had phenol and botox injections at Gillette. He is adjusting very well and has a super gait right now for gait trainer walking and free walking-supported. Floor time is a bit of a limp noodle fest, but we are working away at sitting, stretching, rolling, and moving in a crawling pattern.
Roa has begun working with a new private OT which is very exciting!! I found Maile on Care.com and she happens to be in the Twin Cities area just for the spring/summer months. She will be working one on one with Roa in a summer preschool program, conductive ed., and in our home. Welcome, Maile to the team!
Jenni is our other PCA and has been great working with Roa Thursdays and Saturdays at Conductive Ed. Roa is doing well at CE, continuing to make subtle changes every week.
Summer is right around the corner and Roa will begin Courage Riders again. We can't wait. Horse back riding is such a great way to gain trunk control.
As difficult as it is to come to this decision, Bryan and I have decided to sell our home and build a handicap accessible one story in a neighboring community. We are anxious about this decision. We LOVE our home and our neighborhood is the best! However, the three levels is getting very difficult at Roa grows. 35 lbs now and tall!
Say a prayer that we can have a quick sale and low stress move into the building process.
Until more time allows..... Jennifer
Roa has had phenol and botox injections at Gillette. He is adjusting very well and has a super gait right now for gait trainer walking and free walking-supported. Floor time is a bit of a limp noodle fest, but we are working away at sitting, stretching, rolling, and moving in a crawling pattern.
Roa has begun working with a new private OT which is very exciting!! I found Maile on Care.com and she happens to be in the Twin Cities area just for the spring/summer months. She will be working one on one with Roa in a summer preschool program, conductive ed., and in our home. Welcome, Maile to the team!
Jenni is our other PCA and has been great working with Roa Thursdays and Saturdays at Conductive Ed. Roa is doing well at CE, continuing to make subtle changes every week.
Summer is right around the corner and Roa will begin Courage Riders again. We can't wait. Horse back riding is such a great way to gain trunk control.
As difficult as it is to come to this decision, Bryan and I have decided to sell our home and build a handicap accessible one story in a neighboring community. We are anxious about this decision. We LOVE our home and our neighborhood is the best! However, the three levels is getting very difficult at Roa grows. 35 lbs now and tall!
Say a prayer that we can have a quick sale and low stress move into the building process.
Until more time allows..... Jennifer
Friday, April 20, 2012
Angel on Four Wheels
I've decided to do an angel of the week post each week. I need the upbeat reminder of all the great people that have entered our lives due to Rojo.
This week, I call bus driver, Dana, our Angel. After such a rough start to the school year transportation system with the very rude driver asking the ignorant question, "Doesn't he walk?", we were truly blessed,to have Dana drive Roa to school.
Dana is smiley, friendly, and talkative. She never makes me feel bad,if I am running late or seem frazzled as I, many mornings! carry Gunnar on one hip while pushing Roa's chair,and pulling the gait trainer along behind. She always warmly greets Roa as a PERSON and makes him beam with pride. As Gunnar and I return to the house, my heart melts as I over hear Dana roll Roa up to the front of the bus to say HI to all the little girls and the to the back to greet the boys.
She makes him feel a part of things when many times he sits apart.
For that, Dana, YOU are the Thayer's Angel of the week! God bless!
Wednesday, April 18, 2012
Elephants, Platypus, and Other Rare Bricks in the Playroom
So, when Roa was first diagnosed with Cerebral Palsy, I bought the book, The Elephant in the Playroom by Denise Brodey. I read a few of the stories, touching tales of families and how they deal with a variety of disabilities, and put the book on the shelf, for years.
I'm not gonna lie. It is a tough read for a mom new to CP Land. These parents describe exactly what we go through each and every day- hope, worry, sadness, fear, shame, guilt, hurt, anger....
This weekend when I chose to take a little alone time in the basement after bedtime and watch a Netflix movie, I chose Rabbit Hole, starring Nicole Kidman. It is the story of a couple whose 4-year-old son is tragically killed and how they deal with the aftermath. (Not an uplifting flick to choose, but it just was one of those nights.)
Anyway,... the Grandmother of the deceased boy had a statement that totally hit home. Made me cry and breathe deep from my nest on the couch. When Nicole's character asked if the grief goes away, grandma said, No.
The weight of it changes with time. It gets lighter and easier to carry. It is like a brick you carry around in your pocket all the time. Somedays it is lighter. Somedays you really notice the weight. But it never goes away.
Wow, that was a phrase of words taken right from my heart. So very true. When it comes to dealing with grief.
Some of you may say, but Jennifer, the kid in the movie died! You have Roa with you on earth.
But, you see, we, special needs mom and pops grieve everyday for the boy he could have been. We keep up the good fight and work work work to make things easier for him, battle away through doctors and therapies in hopes that his future will be a little more bright... yet inside,
we are crying, stomping around, angry, pulling our hair out with sorrow that OUR child is not TYPICAL. OUR child is the proverbal elephant in the playroom that others look at with curiosity, move around as if he has an enormous bubble surrounding him and his special equipment, and ask questions about him.... over and over... the QUESTIONING! UGH!
That is the brick in the pocket. Mine is marked CP Land.
Some days, I am comforted by the extra load. God put me in special education for a reason. It was my destiny. I will be the best mom I can be and plan and budget, and follow through with all the activities recommended by therapists and doctors. I will do do do do more more more..
Roa will teach people, bring tolerance and acceptance to lives that he touches.
The brick needs me to be strong to carry it around and think optimistic thoughts. Be the BRICK, BE the brick!
Some days the brick, pisses me off! God, the load of it! And it won't LEAVE my pocket. I try and get away, with a movie, a long walk, a glass of wine, but it is still there in my pocket. The fears, the questions, will he ever move independently?, will he ever do more than laugh, babble, yell, and cry? will he have friends? will he live somewhere besides with Mom and Pop? will he ever be able to tell us why sometimes he SCREAMS in the night and breaks our hearts for hours at a time?
The brick should be thrown through the CP Land Town Hall window where I can then promptly run away from it all and my Roa could be the TYPICAL. Not the ELEPHANT.
I started reading that book again yesterday. I relate to the social awkardness, the urban hermit attitude of some of the parents. I relate to the marital issues that arise when you are so focused on the disability that you forget who you are as a couple. I relate to the relationships of family and friends that change and sometimes end over time. I relate to the sadness of watching a sibling grow and change while your other Pride and Joy remains a baby of sorts.
It is a tough read. I'm not gonna lie. But it is a little easier when, as you read, you reach in and touch that brick in your pocket.
I'm not gonna lie. It is a tough read for a mom new to CP Land. These parents describe exactly what we go through each and every day- hope, worry, sadness, fear, shame, guilt, hurt, anger....
This weekend when I chose to take a little alone time in the basement after bedtime and watch a Netflix movie, I chose Rabbit Hole, starring Nicole Kidman. It is the story of a couple whose 4-year-old son is tragically killed and how they deal with the aftermath. (Not an uplifting flick to choose, but it just was one of those nights.)
Anyway,... the Grandmother of the deceased boy had a statement that totally hit home. Made me cry and breathe deep from my nest on the couch. When Nicole's character asked if the grief goes away, grandma said, No.
The weight of it changes with time. It gets lighter and easier to carry. It is like a brick you carry around in your pocket all the time. Somedays it is lighter. Somedays you really notice the weight. But it never goes away.
Wow, that was a phrase of words taken right from my heart. So very true. When it comes to dealing with grief.
Some of you may say, but Jennifer, the kid in the movie died! You have Roa with you on earth.
But, you see, we, special needs mom and pops grieve everyday for the boy he could have been. We keep up the good fight and work work work to make things easier for him, battle away through doctors and therapies in hopes that his future will be a little more bright... yet inside,
we are crying, stomping around, angry, pulling our hair out with sorrow that OUR child is not TYPICAL. OUR child is the proverbal elephant in the playroom that others look at with curiosity, move around as if he has an enormous bubble surrounding him and his special equipment, and ask questions about him.... over and over... the QUESTIONING! UGH!
That is the brick in the pocket. Mine is marked CP Land.
Some days, I am comforted by the extra load. God put me in special education for a reason. It was my destiny. I will be the best mom I can be and plan and budget, and follow through with all the activities recommended by therapists and doctors. I will do do do do more more more..
Roa will teach people, bring tolerance and acceptance to lives that he touches.
The brick needs me to be strong to carry it around and think optimistic thoughts. Be the BRICK, BE the brick!
Some days the brick, pisses me off! God, the load of it! And it won't LEAVE my pocket. I try and get away, with a movie, a long walk, a glass of wine, but it is still there in my pocket. The fears, the questions, will he ever move independently?, will he ever do more than laugh, babble, yell, and cry? will he have friends? will he live somewhere besides with Mom and Pop? will he ever be able to tell us why sometimes he SCREAMS in the night and breaks our hearts for hours at a time?
The brick should be thrown through the CP Land Town Hall window where I can then promptly run away from it all and my Roa could be the TYPICAL. Not the ELEPHANT.
I started reading that book again yesterday. I relate to the social awkardness, the urban hermit attitude of some of the parents. I relate to the marital issues that arise when you are so focused on the disability that you forget who you are as a couple. I relate to the relationships of family and friends that change and sometimes end over time. I relate to the sadness of watching a sibling grow and change while your other Pride and Joy remains a baby of sorts.
It is a tough read. I'm not gonna lie. But it is a little easier when, as you read, you reach in and touch that brick in your pocket.
Thursday, April 5, 2012
Wednesday, March 28, 2012
Two on the Bed and the Little One Said...
Roll over! Roa is really starting to roll! It is exciting. And dangerous. Roa rolled right off our bed this weekend...onto hard wood floors, I'll add. YIKES. He didn't cry.. amazingly, but he does have a goose egg on his head. Poor guy.
I ADORE the fact that we have to be more careful with his position in the house.
Other than rolling off of furniture, Roa's other big choice of activities is to climb our newly carpeted basement stairs. Up and down we go...practicing those alternating patterns of climbing. I must say, he is getting it. He needs support in his midsection and doesn't quite balance, but it is coming. Baby steps marching forward.
We purchased a SADD light to possibly help with Roa's sleep disorder. MaryJo, school OT, recommended we try positioning Roa in front of the light for 1/2 hour before bedtime to try and reset his internal clock to sleep longer. We haven't tried it for AMAZINGLY enough.. Roa is sleeping like a champ with only one brief wake up. He is giving up napping, I am sad to say, but that seems to help night time sleep. PRAYING FOR CONTINUED SLEEP!!!
Other new therapuetic attempts....
The Wilbarger Brushing program- to help him process movement and increase body awareness. 6-8 times a day, we should brush Roa's entire body and do joint compressions. We have decreased the amount to about 2-3 times due to the nice weather, but it seems to alert his little body.
http://www.sensory-processing-disorder.com/wilbarger-brushing-protocol-who-can-do-it.html
Therapuetic Listening program- twice a day for 1/2 hour, Roa wears headphones and listens to specially designed music to help him concentrate on tasks, coordinate muscle movements and stimulate brain processing. We just started this via Kara at Functional Kids, OT,... we will keep you updated onto changes.
http://thelisteningprogram.com/
I have begun corresponding with the director of the Snowdrop program. Based in England, this form of intevention is a brain-based therapy that is new and becoming quite popular in Europe, Australia and a few places in the US. Repetition of tasks based upon a child's skill level to train the brain to complete everyday common life skills is its main premise. I will keep you updated of it's plan....
http://www.snowdrop.cc/
Yes, another day of battling through the Land of CP. Adventure on weary travelers... the day is just beginning.
I ADORE the fact that we have to be more careful with his position in the house.
Other than rolling off of furniture, Roa's other big choice of activities is to climb our newly carpeted basement stairs. Up and down we go...practicing those alternating patterns of climbing. I must say, he is getting it. He needs support in his midsection and doesn't quite balance, but it is coming. Baby steps marching forward.
We purchased a SADD light to possibly help with Roa's sleep disorder. MaryJo, school OT, recommended we try positioning Roa in front of the light for 1/2 hour before bedtime to try and reset his internal clock to sleep longer. We haven't tried it for AMAZINGLY enough.. Roa is sleeping like a champ with only one brief wake up. He is giving up napping, I am sad to say, but that seems to help night time sleep. PRAYING FOR CONTINUED SLEEP!!!
Other new therapuetic attempts....
The Wilbarger Brushing program- to help him process movement and increase body awareness. 6-8 times a day, we should brush Roa's entire body and do joint compressions. We have decreased the amount to about 2-3 times due to the nice weather, but it seems to alert his little body.
http://www.sensory-processing-disorder.com/wilbarger-brushing-protocol-who-can-do-it.html
Therapuetic Listening program- twice a day for 1/2 hour, Roa wears headphones and listens to specially designed music to help him concentrate on tasks, coordinate muscle movements and stimulate brain processing. We just started this via Kara at Functional Kids, OT,... we will keep you updated onto changes.
http://thelisteningprogram.com/
I have begun corresponding with the director of the Snowdrop program. Based in England, this form of intevention is a brain-based therapy that is new and becoming quite popular in Europe, Australia and a few places in the US. Repetition of tasks based upon a child's skill level to train the brain to complete everyday common life skills is its main premise. I will keep you updated of it's plan....
http://www.snowdrop.cc/
Yes, another day of battling through the Land of CP. Adventure on weary travelers... the day is just beginning.
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Prairie dog delight at the Madison zoo