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Wednesday, July 15, 2015

Coming back to blogging

Hello again......

Well I  have gone back and forth with what to do with this blog for awhile now. I finally realized that this is my safe place. I need a place to put my thoughts and feelings. I need a release and this is the best place for it. Facebook and Instagram and fun and all but I seem to get into trouble more often than not. This blog is something that people have to want to come and read. It isnt just in their news feed. So here I am.

This year past year has been full of BIG changes for our family, and this coming up year will be no different. We are always on the go and have something going on. Im going to try my best to wrap it all up into one post so I can just move on to blogging about our lives again,

Last year....
Our family was blessed beyond measure with this little guy. We got the privilege of seeing him come into this world and he has never been without us. This is little guy has healed placed in my heart that I never knew were broken. His adoption was a surprise to use but not to God. We only had 4 weeks to get ready for him and he is just wonderful. I cant believe it but we are about to celebrate his 1st birthday in just a few weeks. It makes me so very sad that this tiny baby stage goes by so fast. We have soaked him in and James is just the best big brother. He is crazy about RJ just like we all are.




James has had some really big changes this year as well. Public school was not the right place for James for many reasons. His pre-k and kindergarten years were really good. He has ups and downs like all kids but the difference is, the people around him had high expectations for him. We didnt have that going into his first grade and because of that he did not thrive. In fact he lost a lot of skills physically and academically. I struggle with a lot of hard feelings with that school and the administration, but that wont help James. I  am sure one day when Im ready to write it all down, I will share but right now the wound is still fresh.

We move forward! James will be home-schooled and I am finally feeling excited about it. My plan for this blog is to be a place to share our homeschooling journey. I am discovering that there is little to NO resources about homeschooling a child with multiple disabilities. James is a complicated little guy but what kid isnt. He is smart and has the ability to succeed in this world, if given the chance. I know that it wont always be rosy, Lord knows we are familiar with this sensation. Like always, I plan on sharing the good with the bad. I hope that someone that is in the same situation, will fine support. 

Our family has moved to a new home. With the addition of another child, we needed more space very badly. I loved our little home. With all the medical equipment and baby toys, we just ran out of room. God always provides though. We were able to find the perfect house for our family very quickly. It has the space we need and even has a pool. It is wonderful to have a place for James to get independent physical exercise. He is a fish!

We have had a few set backs this year. With the emotional toll that school took on James, we have struggled to bring him back. The stress and anxiety he experienced has made him very much against learning of any kind. We have a lot of work to build back the confidence that was so shattered. We are working with a psychologist and psychiatrist to help James be able to deal with his anxiety disorder along with his physical limitations caused by his dystonia and CP. He will get there and we are going to provide whatever he needs to be the best James he can be.

Physically James has reached a stage where we are waiting on his desire to be more independent. As the years move along, we have learned that pushing our wants and desires on James, only causes everyone frustration. James has to want it for it to be something that is successful. And I no longer want to be the Drill Sargent  in his life. I want our relationship to be about me lifting him up and being a cheerleader not making him feel like he is never enough. I think I fell into that trap to some degree. I found myself being happy for physical milestones and then instantly thinking of the next one and how we were going to accomplish it. In that process, I taught James that he was never enough. I wont do that anymore. If James never takes an independent step, I want him to know without a doubt that I think he is awesome. Of course I would love to see him be independent but only because I know that certain things in life will be easier if he does. But it isnt my life, this is James's life and I have to let him live it. I am Mamma and my job is to build him up and be his soft place to fall in this cruel world. So I will be patient and allow James to discover how he needs to navigate this world physically. We do a small amount of structured PT and that is done in the water because he likes it. We do continue to do our yearly intensive physical therapy because that can be done in a camp like way through play. 


Those are the 2015 highlights. I hope those of you that still read blogs enjoyed this little update and continue to follow us.
 * Photo credits Bookout Studio for first 3 images on post
  








Wednesday, October 31, 2012

Pirate Tricked Walker


When Life gives you lemons...Make a Pirate Ship!!! I am always trying to do things to make James walker look non medical and of course COOL! So this Halloween I decided to transform his walker as well. James was a happy man and very excited to show all his friends.

How to: Seriously I am NOT a crafter. I come up with ideas ok but the execution isnt usually very good LOL. This costume is totally homemade. 
Ship: I got a tri fold presentation board from Hobby Lobby. ( the kind that kids make school project out of) and I laid the middle section brown side up on top of the Kaye Walker. If you slide it back past the Pelvic Prompts ( or if you dont have those past the top cross-bar ) it will sit perfectly on the wheel housings and the side cross bars that run under the handles.
 I then cut out the top of the board so that James can stand just like normal and use the walker normally. Make sure you leave about an inch and half on the sides so that it will still sit on the side cross bar. I then poked holes with a screw drive on either side of the wheel bars and ties some twine. I wanted his teachers have an easy way to remove it if needed.
 I used a poster board and wooden dowel rod ,that I zip tied to the last cross bar in the back, for the sail
I had a piece of red and white stripped fabric that I glued to the poster board. NOTE this makes the poster board heavier so you will need to put some tape on the dowel rod to hold the sail in place.
I then printed out some clip art port hole and anchors for decorations. I colored them and glued them on.
The Pirate costume: REALLY simple. James needed to be able to walk normally and not be hindered by a bulk costume. So I cut off the lower 1/4 of an old pair of jeans. I make them have jagged edges. I then tied some of the red and white fabric that I used on the ship to a belt loop. His shirt is just a striped t shirt and a black vest. for trick or treating we will add some pirate make up :-)

Saturday, July 28, 2012

He is James FIRST!!

I read an article from another blog mom that talked about how her children are having to deal with questions about being adopted into a multi-racial family. It got me thinking about our journey and the things that people say to and about children with different physical abilities. It made me want to share my thoughts on what it is like to be on the this side of the story.

Before James, I used to think that this world was pretty accepting of the special needs population. I saw handicap stalls everywhere and there were always those special blue parking spots at every business with a ramp. What else could they need, right? Little did I know that God had big eye opening life experiences in store for me when James was born. See, when I look at James I see an awesome, funny, smart, handsome little 4 year old. He just so happens to move differently than other 4 year old children but it certainly doesn't define who James is.

In college I took a child development class for my teaching degree, and one day we had a guest speaker that came in to talk about "Child-First Speech" At the time I remember thinking that this was silly. What did it matter if I said "That is the child with cerebral palsy" instead of "That is the cerebral palsy child"   I mean that is just arguing semantics right? Are the parents or child really going to feel different if I change the wording around? Well, I am here to tell  you it DOES matter and I DO notice. I am not saying that everyone that uses a diagnosis to describe someone is being intentionally rude. And for that person it is a once in a while thing. They might see someone with a different physical ability and use the disability to describe who they are talking about and then move on. But when you are on the other end of the descriptor and it is your child that is being described over and over by such a surface and small part of who they are it gets old really quick.

Take me physically for instance. I am a big girl and could certainly stand to lose weight. I know that when people describe me to someone they are going to describe my size as well. But do you think anyone would go to my mother and say "Oh, you are the mother of that fat girl". No! of course not. They would use my name or some other describing feature about what I do for a living or maybe my personality. So then why is it that people feel it is perfectly ok to come up to me and say " Oh, you are the mother to that little CP kid" I get that at LEAST 3 times a week...usually more. Like CP is all that James is or will ever be.

Right now James doesnt notice, but I do. Right now James doesnt see himself as "different". And I hope to keep it that way for as long as possible. So why would a parent allow a child to come up and ask him or me "What is wrong with you?" or "What is wrong with his legs?" When did it get ok to ask such personal and medical questions??? I have even had parents tell me that that they encourage their children to ask and that they dont see anything wrong with it. My response to that is this..... I totally agree that children are  naturally  and innocently curious about things that are different from what they are used to. Here is where we differ of philosophies.  It is the parents role  to educate children that we are ALL different and it different doesnt equal wrong. It is NOT my job to educate your children about what is different about my child. If they have questions, then you should answer those in the privacy of your own home. You should stop your children from asking those personal questions and redirect them to more appropriate questions.  Just like I will do with my son when I explain that sometimes people are rude, but we still need to be polite and just tell them that you dont feel comfortable answering such a private question.

I guess I look at it as just simple manners. You wouldnt start asking another mother within the first 5 mins  you meet them personal and medical questions about there "typical" child, so dont do it to mine either. Just because James has to wear his difference where everyone can see it, doesnt take away his right to privacy. It is not ok to walk up to a complete stranger and the first question be "Hi, what is wrong with him?" Honestly, I dont ever mind people asking about James and how he is doing. I love sharing how amazing he is. But that is not ALL James is. CP is a part of his life and yes, it has altered his path a great deal, but that doesnt mean that he is any less of a human being because of it. I love to share his progress but I also want to talk about WHO James is. I want to share that he learned to read a new sight words today or that he got a cute new haircut. I want to talk about the funny things he says. I dont want  to have to give a medical laundry list to everyone we bump into, just because they are curious.

So life lesson time here... When you bump into someone with a child that is "different" be a model for your children and instead of zooming in on what is different between your child and their child. See the Child First and start talking about how they are alike. ( See that class WAS useful) Your children will learn how to be accepting of my child by how YOU interact with him.  We are just mothers with children...just like you. We have more in common than we have differences I promise.

Monday, March 26, 2012

Cerebral Palsy Awareness Day

 Today is CP awareness day. In our hose we really dont need to be made more aware of CP but I think it is a good opportunity for other to ask questions and understand a little more about CP. So this post is going to be a little fact or fiction about CP. 



Cerebral palsy, also referred to as CP, is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring before, during, or shortly after birth; or during infancy. These disorders are not caused by problems in the muscles or nerves. Instead, faulty development or damage to motor areas in the brain disrupt the brain's ability to adequately control movement and posture.
"Cerebral" refers to the brain and "palsy" to muscle weakness/poor control. Cerebral palsy itself is not progressive (i.e. brain damage does not get worse); however, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same. Cerebral palsy is not communicable. It is not a disease and should not be referred to as such. Although cerebral palsy is not "curable" in the accepted sense, training and therapy can help improve function.
There a different types of CP: Spastic diplegia, Spastic cerebral palsy ,Athetoid, or dyskinetic cerebral palsy, Ataxic cerebral palsy, Mixed forms. James' diagnosis is Spastic diaplegic but we believe that he does have more of a mix because he shows some signs of Ataxic CP. James' CP was cause by a stroke that he has in utero. The stroke cause a brain bleed ( PVL) a that cause the damage to his brain thus CP.

Here is a little piece of  CP history that I found interesting.
In the 1860s, an English surgeon named William Little wrote the first medical descriptions of a puzzling disorder that affected children in the first years of life, causing stiff, spastic muscles in their legs and to a lesser degree, their arms. These children had difficulty grasping objects, crawling, and walking. They did not get better as they grew up nor did they become worse. Their condition, which was called Little's disease for many years, is now known as spastic diplegia. It is one of several disorders that affect control of movement due to developmental brain injury and are grouped together under the term cerebral palsy.
Because it seemed that many of these children were born following premature or complicated deliveries, Little suggested their condition resulted from a lack of oxygen during birth. He proposed this oxygen shortage damaged sensitive brain tissues controlling movement. But in 1897, the famous psychiatrist Sigmund Freud disagreed. Noting that children with cerebral palsy often had other problems such as mental retardation, visual disturbances, and seizures, Freud suggested that the disorder might sometimes have roots earlier in life, during the brain's development in the womb. "Difficult birth, in certain cases," he wrote, "is merely a symptom of deeper effects that influence the development of the fetus."
Despite Freud's observation, the belief that birth complications cause most cases of cerebral palsy was widespread among physicians, families, and even medical researchers until very recently. In the 1980s, however, scientists analyzed extensive data from a government study of more than 35,000 births and were surprised to discover that such complications account for only a fraction of cases--probably less than 10 percent. In most cases of cerebral palsy, no cause of the factors explored could be found. These findings from the National Institute of Neurological Disorders and Stroke (NINDS) perinatal study have profoundly altered medical theories about cerebral palsy and have spurred researchers to explore alternative causes. 
As the old saying goes " The more you know" I hope this post was somewhat informational and you come away with a little more understanding of CP. But the MOST important thing that I want people to understand is that CP is just a part of life. It doesn't mean that people should be afraid to care or love kids like James. In fact you might find that they are pretty amazing. 
I get a lot of well meaning comments of sympathy about raising James but I have NEVER thought that raising James was a burden. In fact I am the one that is the lucky one because I get to see God miracles in a physical way everyday. I get to watch a child overcome obstacles that, according to the medical world, he should have never overcome. I am the one that is lucky to have been given James to raise. True, what CP does to James just plain ole' sucks sometimes but it doesn't not define my son. It is just apart of the wonderful and amazing kid that he is. 


Tuesday, March 6, 2012

What is Normal

Normal.....That little word defines us in so many ways doesn't it.  "Lets get back to normal, I don't feel normal, It is just a normal day.....that child isn't normal"  what exactly IS normal anyway. Don't we all set that for our own family. If that is the case then, there shouldn't really be a set standard for "normal" right? Then why do I seek it so much?? Why do I crave normality? When in reality I cant even define it.

There are days when I sit and try to imagine my life as "normal" and for me that means that James doesn't have cerebral palsy. It means that I don't understand medical lingo, or have medical equipment in my home. It means that my calendar is filled with t-ball games instead of doctor appointments. But that isn't what my normal is supposed to look like and that is hard to wrap my head around as James gets older. Now that surgeries ( for now) are past us, I have been searching for that elusive state of normal. I have come to realize that I don't even know what it is supposed to look like for use anymore. We are trying to step back some of James's physical therapy appointments and let him build strength by doing those typical 4 year old activities. The PT quote was "Lets let James be a normal 4 year old for a while" How??  Normal doesn't come with a home program, checklist or follow up appointments to make sure that I am doing it right.

Society says normal is a perfect able body, but what does normal look like for a family that has a 4 year old that has CP due to a intro uterine stroke? I don't have an answer to myself because I am coming to realize that normal isn't on the outside, but instead normal is a state of mind. Normal is feeling ok with spending the day feeding the ducks in the park instead of worrying that James is missing a PT appointment. Normal is watching James play with his toys and not feel the need to keep a running checklist what movements his body is or isn't making. Normal is enjoying the gift of motherhood, instead of feeling like I am failing everyday if I miss a stretch.

So today I am going to do 1 normal thing with James..........well our version of normal :-)

Wednesday, February 22, 2012

Week # 3 and the ER


The "little room" this is the room that you just dont want to be in. and especially if you are away from home. But Monday afternoon this is where James and I found ourselves. James woke up that morning just not himself at all. He was cranky and sleepy and refused to eat anything at all. When we got to PT that morning, and I put him in his walker, he could barely take a step. We thought that he might be just a little sore at first, but as the morning went on we realized something was wrong. James couldnt clear his toes when he walked and was loosing his balance even while sitting. And he was complaining that his neck and head hurt. The PT and I agree that he needed to been seen. So she set up for us to go to the Children's Hospital after hour clinic.  and that is where this picture was taken

 James was also starting to show symptoms that were really scary. See his left eye here. It had wandered out so far to the left that the doctor at the clinic was very concerned and she sent us directly to the ER. They called and had us preadmitted when we got there. On the way over to the ER I glanced at the report she sent with us and it said "Possible case of Meningitis" Well needless to say my foot hit the gas a little harder.
 When we got to the ER they took us right back and had 2 doctors waiting to examine James. One was the infectious disease doctor :-( After both doctor have James a physical exam they told me that they are going to run bloodwork but they were 90% sure it was NOT meningitis. But they were still concerned about his eye and the other symptoms. So they ordered blood work and a CT scan. 
 CT scan came back perfect ( well as perfect as a kid with CP can) and the bloodwork confirmed that it was 100% not meningitis. I  can now breath! But they did discover that James was dehydrated and having severe muscle spasms. So they push some fluids in him and sent us on our merry way. They wanted us to have the PT check him out the next day and make sure his symptoms were gone.  
James woke up a different child the next morning! He was happy and wanted to eat. We went to PT and did some much lighter work.
 The PT's kept commenting on how James was better.

 It was such a relief that he was moving and acting more like himself




 See the little dog on the treadmill? That is Prince. James wanted him to go first :-)
So that is how Week #3 started out. I am happy to say it is going much better now. We are making DOUBLE sure that James is getting lots and lots of fluids that have electrolytes in them.

Sunday, February 19, 2012

Homesick

This is about the time in the program that I get homesick. I am starting to feel some of those feelings but I am also feeling really excited about James' progress. This being our 3rd time doing the Spider program I can truly say that it is worth every ounce of homesickness, every penny spent, and tear shed. In 3 short weeks I watch my son's body transform and his confidence grow. This last week is the hardest but it is also the best. I can't wait to see what the final review shows.

I am already planning what we are going to do when we get home. And for me this is the best part. I am really planning on doing some FUN things! James will still get once a week PT at school and once a month we will come down here to b-ham for PT. But we are going to do swimming and horseback riding and activities that are fun but keep allowing James to develop. And I can't wait!

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