Mickey Mouse - Live on Stage

Along with all the fun party stuff, Tyler got tickets to Mickey Mouse Live on Stage. Normally we would need to buy the tickets and pay a billion dollars extra to get close enough that Tyler can see or hope that whatever center we are at, allows for accommodation tickets. We have only gone to the Delta Center in Utah and not the Airway Center in Arizona. But the accommodations that they made for Tyler were amazing.

Our tickets were for the second row! Tyler and Grayson were so excited. Tyler did a great job of handling the countdown for it and was ready to go on the day of the " Talent Show." We headed into downtown.

SOOOOO funny!! 

We made our way to the floor and enjoyed the loudest concert we could have ever watched. But the characters were great and Tyler loved every second of watching his best friend Mickey Mouse and Goofy.

The best part.... The joy and excitement on the two boys' faces. Oh how I love and adore them both!

Pine Wood Derby

Did you know that there are ADULT pinewood derbies all over the country? Did you know there are such dedicated people to these stupid cars that you can find almost any style on the internet? Did you also know you can buy a pine wood derby car that is guaranteed to kick butt in ANY pine wood derby and has been tested to win?


Well, when you as handy as we are, you find out ALL these things. We refrained from ordering the mustang and the viper, but we did order a plain car because we didn't have the saws that we needed. But in order to stay in compliance with the rules we needed to have Tyler do the rest. And boy did he!

He wanted to paint his tiger stripes. We didn't have enough wait so we ended up adding a simple weight at the bottom of his car that really made it so he did PRETTY well. He won a few of his heats but nothing big. But for Ty to watch his car race, was plenty for me!





Tyler really loves Scouts. He participates when he can. We are struggling with adapting some of the activities so he isn't fully left out or the target during their games. But overall he loves it.

A huge thanks to a anonymous to you ( but not to me!!) donor, who purchased Tyler a scout uniform. We are so blessed to have such amazing people in our life and who care. It was nothing to him, but it was huge to us!

Bumble Bee Ranch

We have been in a group called HOPE KIDS since Tyler was really little. They even have a Utah Chapter that our cousin Kayden, and Noah are a part of. In Arizona all of the activities are a lot further away than we are use to, but we try to make a few of them.

A few weeks ago we went to the large party at Bumble Bee Ranch.  Where we were welcomed with amazing volunteers and food and lots of fun things to do.

Bumble Bee Ranch is pretty far from our house and took about an hour and a half to get there. And trust me, my children do not travel well. The last ten minutes of the drive were on unpaved roads and that helped with the fun bumping of the ride. But we were happy to get there.

The morning of the event a huge crash shut down the freeway on both sides of the freeway so we even had to find the alternate route to get there. We were rebels!

We got the list of things to do for the day when we checked in and headed over to eat before we got going on events. Some of the things on the events had a long wait and the boys weren't interested so we got their list and decided on what we would do.

Ty wanted to ride the "Bucking Bronco" so we waited our turn on that first. He loved it. Dallas had gone to get sunscreen so that my vampire white children wouldn't get a burn, even with the overcast day! While he was gone we got on but didn't ride. But as he walked up we started riding our Bronco.

Tyler was so excited and loved it. LOVED it. He kept wanting to go higher but they were a bit worried   that he wouldn't be strong enough to hold on much higher. But we tried it a few times. He was so funny. He told them he was flying and he was higher than the birds. He loved it and the volunteers were so good to him.

 Dallas wasn't so sure that Tyler would like it but he did. He loves things like that. Which is a weird, far cry from what he use to be like a few years ago. He is such a brave kid. The most talked about thing that Tyler wanted to do was ride a horse. The first time Tyler rode a horse was with his Grandpa at Wheeler Farm. I always thought that all my kids would be riding their first horse with their Grandpa, but that wasn't in the cards for Grayson.
         
Far off in the field  was the biggest little boy in the world. My little baby was riding a horse. His dad was with him for the first of the ride and we swapped so I could get some pictures of Grayson.
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Grayson is a pretty solemn kid. He has a great personality but sometimes drawing him out of his shell takes a little bit of work. This horse had him smiling and he was so incredibly sweet with the horse. He kept petting her and saying that she was pretty! He was so, so happy!

He is so in love with doing something like this. He enjoys it so much and it helps me see into this little difficult child. We are definitely looking at ways to keep this kid drawn out like this.








Next up Tyler was determined to climb the rock climbing wall. He of course, knew that he was full capable of climbing clear to the top with no help so off he went. With some minor adaptations he was able to get up as high as I could keep his feet on the handles but he loved jumping down the wall.

I have always wanted him to try, even going into it we knew he would "fail" by most standards. But a little bit up the wall was enough of a win for him and for us.
(Some day I will be super skinny for all the lifting I do for both of my skinny toots. My arms should be like NOT flabby!)
 
Grayson again, loved this so much. He loved being up in the air and as high as he could be. He was not able to climb it all on his own but he also had a good time. This little boy could live outside in the dirt and the gunk and the fun things with horses all day!

Bumble Bee Ranch was a great successful trip. We probably couldn't go much further than that with the boys for a while. Grayson is the WORST rider. We will be looking at medical flights only for a while.

The past almost year, that I have been working with the Mesa United Way has been so good for me, but being with these little munchkins on the weekends has been far more rewarding or as rewarding as helping those in need. I feel like my need for these 2 has been growing with no way to satisfy it. This for sure helped that out.

We had plans the next weekend to do Sky kids, but I got the super flu that as been hanging around our area and hope to be back on their flight schedule in November.

Easter is coming up and as a social media outlet I wanted to just add a quick note of testimony at the bottom of my blog.  The #becauseofHim movement has me realizing just how important family is. Creating this little family of mine and embracing the joys and lows is part of the plan for us. Infertility was not what I had planned and it robbed me of what I thought my family would be. It has even torn apart my extended family. But this is my family and I want them to have the warm, loving and caring things that I can provide them with. Families, They are forever! 

A Movie Night

Tyler has not once seen a full length movie. He has seen Winnie the Pooh but spends half the time throwing stuff and not paying attention. He has seen a few hour long Sesame Streets or Barney’s but not anything that is “plot worthy.”

We have been trying a lot of new things lately and trying to do things all together. He mentioned one night that if Ty earned a certain amount of tokens we could pop popcorn and turn on a movie. We thought of both kids interest and came up with Car’s. But I was a little concerned about the time it took to watch Cars. So we decided on the second best, Mater’s tales.

We put out a blanket, popped popcorn and got them
 all set up.

After taking a million photos so we could blog  have them for posterity and to remember the good times  we realized that Ty was not going to be able to lay on the floor and watch.

So we rearranged adapted our original idea and it worked It seemed to work best for him and Grayson loved it regardless. That is one obsessed child.

Things we Adapted to make it work:

• First and foremost, we tried something new. It is SO hard to try something new. 
• We put pillows down but quickly realized it wasn’t going to be close enough or comfortable enough so we pulled out an extra pillow AND a bean bag chair. 
• We all sat down and all talked about the movie and how it works. 
• We stayed excited, even when we could tell it was getting a little to long. 

Things we plan to do next time: 

• Try a movie he is interested in. 
• Do it more often. 
• Make sure we are all a little more comfy
• Just enjoy.

What things do you do that require you to adapt, but your family has loved doing?

* non personal photos are from Google Images*

Special Needs and Chores

We have a some what offensive term in our household regarding Tyler and his chores. It falls into many categories and not just with us as his parents. EVERYONE around us does it. It doesn’t just happen to Tyler but to kids that are sick, or handicapped or just cute. We call it “ The crippled kid syndrome.”

Mind you, if you said it, you would probably get some nasty looks regarding your words but the syndrome could be dubbed anything. Like “ sick kid syndrome,” Our kid has issues syndrome” Cute syndrome.” Grandma syndrome” or “sucker syndrome!”

All the syndromes are the same. Basically, because things are hard for Ty to do them AND they take forever we just either 1) do it for him or 2) he tries and cries and we do it for him. The biggest part of the syndrome is when you go someplace, Ty is SO polite that people just give him stuff. While it is nice sometimes, it can create massive problems when he CAN’T have something.

Fast forward to Ty being “ Almost 8” and has no chores to do. Not kidding. I do EVERYTHING. Dallas is doing the best he can to help me but I would get all sad when I saw all the fun stuff on toddlers doing chores and yet my 8 year old isn’t doing anything.

I went on a search. What chores can my visually impaired kiddo do?  Should they even have them? How long can I do everything? Is it showing responsibility to allow Ty to do nothing. Not even put his plate in the sink.

So I googled searched and Pintrest shopped. I came up with some things for Ty to do. And in turn also found some toddler ideas that Ty and Grayson can do.

What I found was interesting. There is nothing on what chores a visually impaired person should do. But there are a lot of reasons they SHOULD do something.

The NFB ( National Foundation for the Blind) encourages you to give your child chores. But to also be understanding that the task WILL take several times longer than a typical child. He will also need hand over hand until he is proficient. He will fight you. And most of all, once you have something he can do, you CANNOT change the drawer or location of the items that he is expected to do.

What we have implemented:

• A reward system: Using a jar and cotton balls as tokens Ty is able to add his tokens into the jar for things he has done to help during the day. While this worked REALLY well at first, we took the jar off the table and have forgotten. But we still remind him to earn tokens and when he misbehaves we remind him that we can take them away.  He has picked the reward and he cannot go until he earns the money. He can go bowling someplace else, but he can’t go to the place he wants to go, Flipside.
• If he doesn’t do the chores or be kind or show us respect, he loses some of his tokens. That gets him going so quickly. He doesn’t like to fail and he likes his reward. He earns the tokens at everything including his therapy. 
• We ask, he does. If he needs help we slow down

What are his chores and what adaptations have we made: 

• Ty puts away the silverware in the dishwasher. I take it over, remind him by physically putting his hands on all the slots where the utensils go. He can’t handle the knives so I do those. He has to be reminded where each slot is, but he does it and he can do it faster as the days go on. 
• He is suppose to help bring the plates to the kitchen sink. He, however, can’t do that if anything is on it. We have lost SO many plates this summer. He has to have someone close by to help him get it to the sink. 
• He helps clean up the carpet ( aka, the sitting room) and he needs a lot of direction because he can’t see all of the stuff that needs to be picked up. He just simple can’t do it. 
• Ty can separate clothes in the laundry room. I pick up the basket of stuff, he sorts it. He can start the laundry with me pointing out the  buttons. He can also help me with moving them into the dryer. 
• Ty has to return the laundry baskets to each room. 
• Ty has to put away his own clothes. 

Grayson’s chores:

• Cleaning up the floor with Ty and Dallas 
• turning on the dishwasher
• When Ty brings in the small clothes hamper from the Boys bathroom, Grayson puts it in the right bins. 
• Grayson puts away his folded laundry.
• Grayson is able to help put the toys in the playroom away. 

Both boys: 

• Hang up their towels and hang in Ty’s room. 
• Make sure Ty’s room is clean of clutter so he can get around.

Adaptations for Ty make thing so much longer. They just do. But he is learning. There is a HUGE satisfaction in hearing him tell his dad that he did it all by himself. We are proud of him. 

So why do we ask our blind kids to do chores? 

• We teach them that they can do something on their own. Especially hard things. 
• We are teaching them to work as a team because we have to be able to work together to get things done. 
• Gives him something to work for. We found the right reward that works for chores, but not for the bathroom. So we keep trying to figure out what works for each situation
• We need and want Tyler to be independent some day. We have to start somewhere.

Chores and responsibility has made him become a bit more grown up. He is more aware that things need to go in the trash. That we have garbage that needs to go out. That he can take stuff to the trash. He can listen to directions and do what is asked. 

What chores do you guys have your kids do?

CLVE

Clinical Low Vision Evaluation. 

That is what we did the week we were getting better from the Flu. And the truth is, it was NOT very fun and I left feeling so down that I spent part of the evening in my bed crying.

So the CLVE was set up through the Foundation for Blind Children of Arizona. We went to a location that was LOADED with as many snow birds as could fit in one location. They were all trying on canes, and getting equipment and stuff for the Macular degeneration and glaucoma. Instead of books to read, they had CCTV’s available so you could read the magazines that were left on the counter. The wall was filled with AS SEEN ON TV keyboards. It was a blind persons dream.

Ty was totally cool with the CCTV’s and we read a few books we brought with us. I filled out the countless pages of paper work and his vision teacher came to met us. Her name is Jenny. Tyler calls her Jenny the Pirate.

To make sure that Ty was at the top of his participating game, we kept him home from school. He had only gone on Wednesday and Thursday because of the flu. Ty had a low low key day, and he was properly bribed to participate.

So what is a CLVE, well we sure as heck didn’t know. So this is what we learned.

1. Intense background and medical history of the patient. In this case we actually struggled to get our doctors in Utah to provide us with a detail of ANYTHING. They just switched doctors and it was a real struggle so we went off the last detailed list of stuff that I had sent to school. Which in fact, was NOT what I had actually sent to school but lesson learned for me. Keep a better record. 
2. Depth perception, color testing, contrast of color, light sensitivity, ability to process what they see. While that seems like a lot, most can be done in a series of a few tests.  He did really well and they were very hard for him to do. When things get hard for him, he does a few things that signal to me that we are going to meltdown soon. 
3. Eye exam with the big chart. Ty does really well with these. He did what he could and then the sadness and meltdowns came into play. 
4. A lot of the rest of the appointment was what was Tyler like in a school setting, home setting, a situational setting. This is where it gets more and more frustrating for me as the mom. They also talk about future goals, things that will be happening and things that won’t be happening. Things that we can see as progression and things we can see as he gets older and things that we can expect as he gets older. 

The purpose of the CLVE was to get a specific piece of equipment that can go with Tyler throughout school. It will enlarge his papers, allow him to write, and also allows the computer to help him read when his eyes are to tired to continue to do so. Right now, he is minimal things that require long term memory to read, so it isn’t as much of an issue. But later in life, it will be. Especially when chapter books and texts books come into play. For now he needs basics, but he needs something basic and then some. 

Ty will be getting a Davinci CCTV for his class and it should follow him through school at the district. We are pretty impressed with the Davinci and really like it. It has way more features than he needs right this second in time but as he grows older he will need what it has to offer. 

We have found he has a severe sensitivity to light and should be wearing sunglasses, but transition lenses don’t come in his prescription and getting him to willingly change into sunglasses is a joke. And because his vision is crappy even with correction, he fights us to even wear those. 

His eye sight with correction is still really bad. He is known to have about 20/500 vision. That is REALLY bad. The picture below is what he sees even with correction. 

For now we work with Jenny, the pirate, Tyler’s vision teacher. She helps everyone enlarge everything and make sure that it is in the size he needs and how to help him do better. 

Ty doesn’t notice he can’t see, He pretends he can. People don’t realize he can’t see. We are trying to accommodate him in every way possible and to help others adapt to him in whatever way possible. My calling at church is his teacher, which has opened up a dialogue with the Church’s disabilities department to get some better visual impairment products and books. We are also trying to figure out what we can do to provide him with the stuff we need here at home. 

So don’t get to alarmed when he doesn’t know who you are or he wants to touch you or comes up really close. He is super smart and will remember who you are. He is also learning to get to the park on his bike with no help ( of course he won’t ever be able to go without someone following him because he can’t see cars coming down the street!) but he is doing really well navigating in a world that was not meant to be seen in the dark. 

pic pic and park

Boy does he look TICKED~~ But he isn't. He just didn't want me to take a picture. Tyler LOVES picnics. He loves to go to the park, spread out his blanket and eat something and play until he drops. When he sees a picnic in his books he runs it over to us and says Pic pic. When he wants some one on one time with us he ask for a pic pic.

He LOVES it. He has shown an interest in a few things the last little bit. Camping, fishing, picnics, the park and kids to name a few. Whenever he hears the kids outside playing he runs over and wants to play. Our neighborhood is full of kids and they are great with him.

But his true love is picnics and slides. If you say we will go to the park you better show up at a park before you make it home. He remembers everything we promise him. So no cheating him out of time at a slide.

His first day of school I made sure a pizza was cooked and a blanket was out and me and him spent ten minutes of time talking back and forth. Reading his papers from school and asking questions.

Then the last day of the week we had a picnic outside watching all of the kids come and go. Today was a special picnic and we went to the big park.

He was filthy, dirty, and gross by the time we left but he was a happy kid. We played for around 2 hours. It is a great park.

As he gets older and the weather is cooling off, it seems that we have some work to do on our vision issues and personal space at the park. A WHOLE other post for you. But he had a blast. He loves the pic pic's that we get to go on.

I hope all things in life can be as easy as taking him to the park for a picnic. I guess it all can't be unicorns and glitter.

Every boy needs a Radio Flyer

Birthdays didn't mean much to me until I had a baby. Then the only thing important to me is making Tyler happy. With that in mind every time his birthday rolls around and me and Dallas get to give him gifts I try so hard to find something that invokes a smile and HOURS of fun and joy.

Last year my sweet little man got a basketball hoop and a chair. That chair is the grossest most loved piece of furniture we own! This year I went in search of the perfect "chair" to give him.

I found the perfect cake for the perfect party but couldn't think of the perfect gift. We went to the toy store and once again found a perfect "gift" but it wasn't "the chair."

I wanted to get Ty a bike but knew that his Cerebral palsy wouldn't allow him to hold on and still ride at the same time. I researched and researched and found a good alternative at the toy store.

A Radio Flyer

Dallas put it together tonight and some little boy LOVED it.

He really really liked being able to ride the bike.

Though we need to make some adaptations to the pedals and it will take a lot to get him to ride it on his own he was such a big kid and he wouldn't stop smiling.

He was pointing up the street and telling his dad he "wanted to go there PLEASE."

The mom had tears in her eyes and she watched him go. Flying up the street as fast as our feet would take him. As we would slow down and turn around he couldn't get his hands up fast enough to sign "more please."
The simple joys of life. The simple joys a 3 wheeled radio flyer will bring.