Just a word

Well I thought I would post a quick Happy tonight. James and I did home Pt today. And it went GREAT! He did all his exercises with min crying and then he and I played a new game that I pulled out of my brain this morning. I am always trying to get him to take BIG steps and to pick his feet up. So today I cut out some dinosaur feet out of construction paper and place them all around our house. James had to walk around the house and find them and stomp really big on them. He thought this was great. I did several versions of the game all with lots of stomping and loud silly sounds. But the best part about it all was the laughter that filled the house and my heart. It was restoring!!

Hi!

A friend reminded me today that I have not posted in awhile , so I am going to attempt a post tonight. I havent posted because I feel like all I do is whine on here lol! And I guess I do a lot of the time. But this is my place to let it all down and out. This is my refuge from the "happy face" that I sometimes I have to force on myself.  Things have just been pretty difficult and I am struggling to get all those hats in the air.

I want to make a post that shares all that James is doing right now but honestly we have hit a wall with PT. And this wall is very scary to me. We are in the postion of yet again watching other children pass by James in milestones in walking. Other SDR children reaching those milestone and getting news that I so desperatly wanted to hear. I am of course beyond thrilled for their families because they too have worked so very hard to reach these milestone but James and I just cant ever seem to climb this dang wall. We get close and I know that if any kid can do it my James can. I am just tired. I am tired of always fighting and scratching just to just to watch from the sidelines. God what is the plan? Can I just get a glimpse of the playbook?

Why cant it be just a little easy, just for one day. I dont want to cause my son pain everyday anymore. I dont want to stretch his little sweet legs and listen to him scream and telling me that it hurts and "Mommy please stop" I dont want to spend my life in a physical therapy office and I certainly dont want James to spend his childhood there. There HAS to be a balance here. I just HAVE to see some sort of light at the end of this tunnel.

I am 32 years old and I have to have hernia surgery next week because of lifting a wheelchair everyday of my child. That  is just not what I thought it was supposed to be and I have to find the balance that God has for me. I am not always the strong Mamma Bear and please know that I love my son just the way he is. I truly do! God has blessed me with a sweet loving child that has more determination that I do. I just have to find my boot strap and start pulling myself out of this pity party. Cause this party SUCKS and doesnt have cake!

In that spirit I will end on a silly James story!  I am working with James and trying to teach him how to take his clothes on and off. So this night he got the bottom ofhis shirt over his head and it got stuck ( and like any good mother I ran for my cell phone to take a pictures) I snapped a picture and as I did James sneezed. He always thinks that is funny but this time he really was laughing. I asked what was so funny and He said " My boogers bounced back in my nose" :-) Silly Goose!

Blah!

Today is just a blah of a day. Not really any reason for it to be I am just feeling the weight of several things on me today. A dear friend of mine just lost her baby boy that was stillborn at 41 weeks of pregancy. I was called to do his pictures for Now I Lay Me Down to Sleep and ever since then I have just been so burrdened for them. Last night I went grocery shopping and as I walked through the baby section to get pull ups for James I was overcome with grief. I havent experienced that in a very long time and it hit me out of let field.  I think knowing that I need to go and edit the images for the family is weighing on me. I just worry about giving the images to them and causing them more pain.

That is not something that I usually worry about. Usually I know that any images I can offer will be loved and cherished but since these are such close family friends I am just so worried about not upholding my duty.  So yeah, it is just a blah day today

9 months ago this week.. LOTS of pictures

It has been 9 months this week since James SDR surgery so you know what that means.....you, it is time for a update. Just in case you were wondering as I type that I hear the dot d.d.d.d.d.d dot sound of a new update in my head. Does that make me strange? I'm sure it does, oh well

As of last update James had been using his walker more but was experiencing some frustrations with his foot turning in on him and also just frustrations of PT in general. I am happy to say that I have some pretty exciting updates to share. I am just trying to figure out where to start. I guess we will start with some facts.

Physical Therapy Update

James' left foot is still turning in but we have a new nifty piece of equipment called a de-rotation cable that James wears when he walks that helps with that and (fingers crossed) will retrain his muscles to keep his foot straight. It isnt very pretty and can be a pain in the tush to take on and off but I do think it is helping. Here is a pick of all the new equipment and the De-rotation cable is the tan and metal looking thing that is attached to his new braces. You can also see his new braces and shoes. You are looking at a small fortune on tis coffee table so I want it to get as much viewing as possible. Thank goodness for payment plans LOL

In  private PT James has seemed to turn a corner with his frustration level and understanding of games. Dont get me wrong he is still very much a  3 year old and like to push those limits. But the crying fits have been drastically reduced. I started doing a new thing with James for his PT. I knew that James likes to have choices and his little life is so limited with PT and being focused on keeping his body loose and learning to walk that I started to have some real worry and guilt about it. SO I brought out my Elem education degree, dusted it off and started to brainstorm ways to help James feel more empowered. And the choice board was born! James therapist and I took pictures of all of the activities that we want James to do in PT ( balls, slide, his canes, the treadmill, etc) and we made little picture cards that had Velcro on the back of them. Each PT session the Pt will choose about 6 activities and stick them on the board. When James gets there HE gets to choose what he does during the session, and when he is tired of one activity we he can tell us he wants to choose something else and then we give him the board. It has been a MIRACLE board. James loves having control over his activities , but the PT and I only give him choices that we want him to do. It is a win win!! And has eased everyone stress level! Below is one of those activities, James loves this one. He gets to stick the little cars up and draw lines to match. Now to James this is a cool matching game but what you are really seeing here is PT and OT at work. The PT is working on strong tall kneeling ( which he is doing amazing at ) and he is also working on being able to reach down and pick up a sticker and bring it back up to the board. On the OT side of things. She is working on correct pencil position and being able to draw certain lines and also matching which help his eye tracking. So lots going on and James just thinks it is a fun game that "he" wanted to do :-) HeHe Tricky Mommy



And here you see our At Home version of the same activity. This is James doing his "chore chart" and cleaning the French door windows. As you can see, we learn the skill in PT but he practices it at home!!

 Now here is James doing some more home PT that is just for fun. Riding his bike. Technically it is a therapy bike but James just sees it as a bike. Mommy seeing strength building

And here is our NEWEST fun therapy. Horseback riding!! James loves the horses. He is getting used to being so high up but he is really doing well. My dad got James his very own saddle to use when we go over to his house and practice. But every Sunday James is taking what is called HIPPO therapy.  You can check it out HERE to get some more info on what the program does for kids like James

No Here are some of my very favorite pictures of James EVER. They really show just how far he has come in just 9 short months. This is James walking in to the Dollar General store in his walker. Walking in public is a huge milestone. It means that James can talk to everyone and experience the independence that other kids experience at this age. He also loves how everyone talks to him and thinks he is so cute.

 And this is just from this week. This is James standing all on his own only using the slide for balance. This is another favorite choice of James' He gets to stand up at the slide and rolls cars down so they can crash into the block buildings. Again this picture is more than meets the eye. You might see a boring picture of James back at a slide. I see 30 mins of standing strength. I see hope that one day James really might be able to break free from equipment!!

Ok now this pictures is really an after picture. James was laying flat on his back and for the first time he sat straight up to sitting without rolling over on his side to help himself. I was on the phone with another SDR mom ( btw her blog about her son Cliff's SDR journey is awesome check it out HERE ) She and I were just chatting about our awesome boys and James just sat right up. I cried and ran right over and took this picture. As you can see James was more concerned with watching his cartoons! LOL

Ok last PT update....sort of! Yes that is James on the potty. But he actually has a Pull up on so I can honestly say that I was NOT taking a picture of my son using the potty! I am sure he will still not like this one when he is grown. Can we say Prom date ammo!! But the reason I took this pic was to talk about our Potty training struggles. When you cant sit up independently you cant really sit on the potty and do what you need to do efficiently. Not something that I ever considered before James. Potty training consisted of lots of tears and frustration because I had to hold James up and on the potty. So I created this little contraption. We call it the Potty Station. It is just a step ladder that I zip tied all the potty training essentials too. They do make adaptive potty seats for CP kids but they are 2500 dollars and tha this is just not something we can do. who could!! Ok so this potty station gives James a place to put his feet and also lean forward so that he can stabilize himself to be able to stay on the potty. I pair it will a potty insert to make it James' booty size and TaDA! We have potty training success :-) the coloring books and things are just for fun. James also gets to put a new sticker ont he ladder each time he goes. AND it gives him a handle so that he can pull to stand and I can wipe and pull his pants up for him. And then we just slide it over to the sink and he turns around to wash his hands. I think I might just apply for a patent on this one ;-)

Now just some fun randomness updates. James is my little social butterfly as you can see. This is a local indoor playground that we go to with friends and he has a great time!

James on the BIG slide!

James and I went shopping and he found a Thinking Chair like in Blues Clues and of course he needed a picture with it! Notice his Little fingers showing you that he is thinking!

Cooking is a BIG deal in this house. Having a Chef for a hubby what would you expect! But at least 3 or 4 times a week James and I bake something and he is getting pretty good at helping. He can now crack and egg by himself. Now waiting for everything to cook still needs a little work ;-)

And when he is not doing the cooking, he is right under my feet in the kitchen with a coloring book telling me how to cook. This is James drawing me a picture of what he wants for dinner! I believe it was a pizza with ice cream on top!

And how do these 2 pictures go together????? Both are VERY rare things to see.

Horseback Riding Lessons

Last week my facebook feed was FULL of all my mom friends talking about t-ball sign ups. Now I know that 3 is pretty young for children to play t-ball and I certainly agree that some of these parents get WAY to involved with over scheduling their children. But then again who and I to talk. I have the most scheduled life on the planet LOL ( but trust me I wish I didn't have to)  Having had grown up with a football coach for a father I have seen some crazy sports moms and dads, and even though I always said I would NEVER be one of those mom. I just never knew that the "option" would be taken away from me. Or that is what satan tried to make me believe.

So instead of whining about what James "cant" do I was going to focus on the sports that James can do and sports that he can be independent in. There are local special needs t-ball league for when he is 5 if that is something he wants to do but the reality is that he will always needs some sort of assistance a sport like that. That is fine of course but I want to expose him to activities that put him on the same level as his peers. James should have to be resigned to always being on the "special" teams. So on a search I went :-)

And I found Therapeutic horseback riding. I had known about it and St. Louis told us it was one of the best therapies for kids post SDR that there are. So I really focused on getting James enrolled. and after a mountain of paperwork....Sunday was his first lesson

James loved it. He got to brush his pony Princess and helped lead her around the paddock to get her ready to ride. When he got on her he spent several minute leaning dow to give her kisses. It was SO sweet. He could barely get started riding for hugging and kissing her. When we asked if he was ready to ride that is when he got nervous. He whined a bit but after about 5 or 6 steps he was telling Princess to "go!" He really had to work all of his muscles to keep balanced on the pony but he did a great job. My Dad and I were on each side to catch him and also to help him push his feet into the saddle.  Even thought he just rode about 15 min he was exhausted from the hard work of balancing. It was a great workout and FUN too! I really hope this is something that he loves to do because it is a sport that I can see him doing independently when he gets older. We will be going every Sunday for lessons and I am sure lots of pictures will be forth coming!!

PLAY! Sharon Johnston Playground

I am very excited about the new playground that will be built this Spring in my local area. For those of you that are on the Jump in for James Facebook site here this post is all the details you were asking for and if not contact me and I hope I can answer them for you.  Before I get into too much detail let me tell you about what it is like to take a special needs child to a playground.

When James was diagnosed with PVL- Cerebral Palsy there were many "dream" for James that I had to revise. There were hardships in life that instantly came to my mind, that I knew James would have to face. I knew about the "big" things that raising a child with a disability brought. What I was never prepared for were those little simple joys a mother gets to share with her son. I wasnt prepared for the fact that if my Mom's Club friends called us for a plat date at a local playground, I would have to say no not because I didnt want to go, but because my child wouldnt be able to participate. And they would say they understood but slowly they just stopped calling us for the playdates because it made them uncomfortable to ask if James would be able to go to this playground. Or we would go and all the other mothers are sitting enjoying time chatting with each other and to allow my son to play I have to carry him to each component and hold him up becuase there isnt anything he can do independantly.

When I used to take my nephews and niece to a playground it never occured to me how wide the sidewalk was or what the flooring was like. I never wondered if they had swings for a child that couldnt hold themselves upright to swing on, I never once thought about if a wheelchair could travel the pea-gravel surface to get to a slide. And I would bet that most of you dont think about those things daily either. But I do now. I now have to plan out a playground visit because the closest ADA playground is 45 min from our home. There is a little playground just 30mins that, at least, has a tic tac tow board that James can get himself independantly to but everything else I have to help him with. I certainly dont mind doing that, but think back to the last time you took your child to a playground. Did you carry them too each peice of equipment and hold them up so that they can play, or did you sit with your friends and chat while you watched the kids play independantly. I would like that too.

I never realized that taking my son to a playground would be one of those things that would be taken away from me when they gave us his diagnosis. And I don't think that it should be, so instead of just feeling sorry for ourselves I knew I needed to change it. I feel that ALL playground should be ADA compliant, but that is a post for another day and I have to start small. SO here goes!

I learned about a group that is building a plauground in my area and I thought that getting in on the ground floor would be the best way to make sure kids like my James have a play to play as well. So I signed up to be the Special Needs chairperson. I am not sure if they always understand why I can make all the meetings since I am the only parent with a special needs child or why I am so passionate that some of the equipment that their " typically developing" kids dont play with has to be included BUT they have allowed me to make sure this playground is at least ADA compliant. And I consider that a big victory for our local town. I am very happy to say that this playground is not only beautiful but that it has components for ALL children of ALL abilities. Not just physically challenged children but children that are in the spectrum of emotional and cognitive delays as well.  And it isnt a "special needs section"!! My child, just as in life, will interact and play elbow to elbow with all the other kids. Which is not only helpful for my child but also for the typical children in teach empathy and acceptance for everyone early in life.  This first picture is the final drawing of the playground. As you can see it is LARGE and very spacious. You will see the little ADA wheelchair that shows all the component

 This is a zoomed drawing of the school aged portion of the playground. See all those lovely ADA symbols. They make me HAPPY!!

And here is the Tot Lot for the 2-5 kiddos. It was very important to me that  these had toddler swings with belts so that all kids can swing. It wasnt until I purchased one of these when James was 2 that James could ever swing.

There are many componets to the playground that are Accessable that arent officially on the Special Needs equipment list. Like the surface. We will be using ADA compliant manufactured mulch!! This is HUGE for kids that use assisted devices to help them walk or play. It means that the muclh will compact and be come a wheel friendly surface.

We are using Leathers and Assoc to build the playground. Check out the link to see other playgrounds they have built. We also have a facebook page with all the info to volunteer and get more info if you are in my area clickHERE to go there. Now here comes the part where I ask for YOUR help. I get many emails everyday from all of you awesome people asking what you can do to help James. This is something that you can do to make a lasting difference in not only James's life but also so many kids with special needs that dont have a place to play like everyone else. If everyone on James' facebook fan page just gave $1 we could purchase one of the peices on the Special Needs equipment list. With that purchase we can also have a plaque that says it was donated by friends of James.

We are a 501 charity which means that you can get a Tax donation letter as well. All you have to do is ask me for that and I can get it to you. There are 2 ways for you to donate. You can click on the PayPal donate button that is on the right side of this blog OR you can mail a check to  this address just make sure you put in the Memo line that it is for the Jump in for James donation. Make your checks out to Madison county Alabama as well.

Sharron Johnston Playground

C/O Jenny Barrett

PO Box 36

New Market, AL 35761

Our goal is $900 I want to purchase the Accessible Parallel Bars but whatever we can raise we will purchase what we can. We have already raised $150 so we are off to a great start.  Here are some of the other Special Needs components.

Tactile / Sound / Special Needs Price

Tap Tubes* $1,000

Sandbox $900

Accessible Parallel Bars* $900

Sound Wall* $700

Tic Tac Toe* $550

Phones* SOLD

Game Table* SOLD

Sand Table* SOLD

Gator Balance on Chains $350

Pictures make me happy

I did some Valentine pictures of my sweet baby boy and his little friend Jakob the other day. I thought I would share them here for those of you that arent on James facebook fan page.

 James and his best friend Jakob

 Sweet smiling face

Such a stinker

 Being silly boys