When the impairment becomes an impairment

After hearing that we were regressing I went ahead and got all of our specialists visits scheduled and out of the way before May/June/July hit. We would really like to move and trying to get all of them in wasn't going to work. This was the first really major appointment that we have had since being pregnant. It is a big deal because we have hit a critical point and holding/lifting and doing what I usually do isn't an option.

This appointment was one that I have actually canceled and rescheduled 3 different times because it can be SOOO traumatic for Tyler. It generally hurts him. They have to pry his eyes open. It makes him very anxious and he gets so much overload. Ty hasn't ever had a chance to use his speaking skills with them them because he JUST started talking sometime between last appointment and now.

First up is the aide. He use to use card that they would watch what he saw. Today Ty held the card and told them what was on it. The objects are black and white and sort of stick figure like. So the Car looked like a boat and the hands looked like flowers. But if he was consistent with that name of the object then this card would work. When Ty got down to smaller ones he would get closer and then look at me waiting for me to prompt him with what it is. It broke my heart.

The next part is the actual Eye chart. When sitting in the eye exam chair you see the screen in front of you. This was where I actually realized what the numbers on the card mean. Ty is ranging about 20/200-600. 20 means that at 20 feet the person can see whatever is ahead of them with acuity of 200-600. So 20/200 you see the LARGE E on the chart. Anything over 200 you see it but with less clarity. Even with correction you will not see it clearly.

While we sad on the chair Ty was asked what was on the TV screen 20 feet ahead of him. He couldn't tell you if ANYTHING was on it. He couldn't see the screen. At that point the exam had to turn to the holding of the hands, wrestle and pulls and pulls while avoiding family jewels.

We didn't need dilation this time so we were over. Dilatation is so much harder because it makes it so they can't see after and for a kid that is visually impaired it makes the day much much harder.

So the impairment of bad eyes has become an impairment. It was always been there. But now I can't give him the world. I have tried. Oh I have tried. I have made EVERYTHING work for him. Now he has to make it work for himself in a world that can see things MUCH more clear than he can.

He handles it like a trooper. I handle it like a mom. My heart aches. My resolve to NEVER have to make my baby go through that is EVEN stronger. Ty is a tough boy. He needs loving care . He needs to function. Those eyes, with the Swiss cheese holes and the right sided gaze is so sweet. But it is an impairment. There is no longer any denying it will impact something daily.

Words have been tossed around like functionally blind, legally blind and low vision for 5 years. For five years we have waited to see what one we would need to use. We now use all of those terms...

The impairment has finally become an impairment. One that has to have accommodations. One that will be there.... forever.

* photo was taken by me with Captured moments mark on it, if you want to use. Please as for original and I will be happy to send it to you!*

We thought it was a fluke.....

But it isn't.

TYLER CAN READ!!!!

I know, I know.. ya right. BUT..... I am not kidding. For real, he can read WORDS.

During the summer we jokingly started writing things on the sidewalk like mom, cat, dad, dog, Tyler. Ty could tell what the word was with no help. We tried again a few other times and moved on to his chalk board. Once again, he got it right.

When school started I told Brandon, our vision dude, that we had experimented with some words with Tyler and he seemed to get them right. Brandon was super excited. He showed us a little thing that he was going to use with Tyler, along with some programs on the IPAD and we wrote down our goals.

Tyler has been able to spell his name for a long time and point it out on a page of names and letters. He can't write it because of his OT issues but he can point out his name. We aren't sure what we are going to do for next year but, HE CAN READ!!

A few weeks ago we got a little index card with a bunch of words and a small note on the back that said " Words Tyler can read at 100%." I had to drop Tyler off at school ( and pick him up early) a few times the last few weeks and I was talking with his sweet teacher. She said that it was some what creepy that Tyler can read. She said at first everyone thought it was a joke but she said his list has grown... A LOT. She said she was getting a list from Brandon to send home.

So.... wanna know what he can read:

Tyler, cat, dog, play, love, I, like, Yes, no, Stop, more, help, home, go, ball, car, mom, dad,

He reads: I like Red, yellow, orange, green, ball, car, cat, dog.

I love mom, dad, play.

They are working on Hat, blue, brown, black and pink.

He loves books. He loves them so much that he would spend all day reciting the book you read him a million times over. We are so proud of him. He is really smart. Now that he is a talking pro we KNOW how smart he it.

When he does something that is very "smart" and we answer that he is right. He says " That's right Tywer. Your so smart!" And he is.

So.... Tyler can read. In the words of Miss Holly. Tyler is doing so AWESOME and we LOVE Tyler.

Penguins, Trains and Pizza

After feeling trapped and blah, Tyler and I headed out! I asked him if he wanted to see Dinosaurs or penguins. Pretty quickly he answered "Penguins" and we were out the door. We took D a drink of pepper and a treat ( Ty LOVES taking his dad a drink of pepper) and went to see the penguins at the aquarium.

We went straight to the Penguins and he was NOT having it at first. I put him up high to see them because they were eating and he had a FIT. I thought, " seriously T. I just spent 20 bucks to get in for you to freak out!!" So I let him down and sat there by myself watching the penguins. When more kids came over and the penguins started to swim he LOVED it. We watched for awhile. Went through a little of the aquarium and played with the sting rays and watched the sharks. He loved the new turtle they have their and we always LOVE the jelly fish. We had to hit up the penguins one more time before we left.

On the way out the door the strategically placed gift shop was there. Big and center was the penguins. Ty wanted to see them so we walked over. He said " Pretty cool. We should take him home." We found one he would touch and brought it home. He said " Fank you mom-e for helping me to take the penguin home." ( I Love him!)

For lunch I thought the best thing to do was go to the mall. Options for everyone. Plus after we could hit up the kids playground and head home. It would take the blahness out of the day. We had a fun pizza date and headed downstairs.

They have the cutest mini express Train that you have to walk by on the way to the play yard. I have never seen Tyler so excited. He even asked to ride it. So we got on and rode away! We were able to ride a lot because Tyler won over the driver and we just kept going. He loved it. He would just sit there and look around. We played for a bit in the play yard but all he wanted was the train.

It took a little bit to get him to leave the train and we had a small meltdown outside. He was determined to con his way into getting a movie but I was strong and promised one another day!

I love days where it works. There is always a hesitation when it comes to our ability to see things and do things. He won't wear his glasses and the sensory overload of sounds is sometimes to much. He can't handle hearing the noises come from places he can't see. We really struggle with a proper sized stroller. He walks so well but he just can't make it all the way. It's hard to see him struggle to move his legs around and need help on things like the slides in the play areas but I am thankful he can do what he can do.

Next week, I think we will try the dinosaurs. As it gets warmer, I think we will have to go to the farm and even try out a inflatable bounce place.

Here is to fun times when it is cold.... AND school.

A trip to the Grocery store

The other day on my "FTYM" days ( fake it till you make it) we headed out to McDonald's and then went to the grocery store. We didn't go to the typical grocery store ( aka Walmart) we needed a better quality meat and a leg of lamb. So we headed to Macey's.

( In case you were wondering I ♥ Macey's)

So we got as we got there I decided to REALLY turn it educational for the Toot!

We started at the meat case.

He saw the full trout. I told him what it was, showed him the sign and he said " ISH."

I told him that he was right it was "F...ish" and proceeded to tell him that we EAT and CATCH fish. Gotta teach him the truth right!

Next up!

I asked him what a Cow said. He said "MOO" in his really low voice and I clapped and Said " YES! A cow. The red stuff is COW! And Cow is YUMMY."

He proceeded to say "good" by his good noise and I realized there were people next to us!

We moved on to the Lamb.

You guessed it. We sang Mary had a little Lamb and Ty said " Baa" and I said YES!!

And proceeded to have him put the Lamb in the cart and said we were having Mary's lamb for dinner!

We went through the store and we found a butterfly net. He was TRYING so hard to catch the butterflies that just happened to be only visible to the blind kid! He LOVED it.

Next up we went to the produce section. The oranges and the fruit smelled SOOOO Good. He was walking up to EVERYTHING and putting his face right next and I would tell him what it was.

The Produce dude was a little older and asked me if he had a vision problem, to which I answered yes.

He asked us to stay there for a minute and he came back with an open Orange, Mango, tangerine and plum and a few other random fruits.

Tyler LOVED it. He smelled them and licked them and the man was SO amazing with him. He loved it and loved all the fruit and smiled and shook the man's hand.

Sorry about the quality. They were taken on my phone.

I think Macey's fruit man did a wonderful job of making my kids trip to the grocery store the BEST EVER!

Did I mention I ♥ Macey's!?

What is going on in OUR world!

I feel like updates .. like what are we doing updates have been kinda missing. So, here is the stuff that grandma likes.

This last week was parent teacher conference at school for the Little dude. We have noticed this term he has done a lot of changing. I was excited to hear what was going on. And then in true ME fashion.. Guess who forgot? Yep. Me!

Thank goodness his cute little teacher, Miss Holly, sent home a little worksheet that they fill out so they have an outline and stuff written down. We also got his updated IEP and it tells us how well he is doing on his goals.

Miss Holly's questions :" In the classroom we observe Tyler hanging up his own coat and backpack. He can now transition to all the activities without throwing a fit. He plays well with other kids and loves to share toys with them." ( That makes me feel sad because he DOES love other kids. He loves playing with my sisters kids and because of me he doesn't have any siblings to play with)

"In the classroom setting we have observed new skills emerging in his communication skills. He has really improved this year. We have been working REALLY hard on colors and shapes and he is easily able to recognize them." ( Ty CAN and does recognize his colors and shapes and his "talking" is doing much better. Though our Vocabulary is very very limited he still seems to get his point across.)

"In the classroom we have see that Tyler has challenges with: Tyler has his challenges to overcome but he works so hard that they are not challenges for long. He is such a hard working kid!" ( We couldn't agree more!)

" My favorite thing about your child is that he is such a hard worker. He is really anxious and eager to learn. I love when he surprises us with what he knows."

It is so nice to see him advancing and doing well. He even has accomplished a few of his goals. He sits at the activity AND DOES the activity for more than 4 minutes ( huge for him!) and he follows directions above his tested level with no problems. Which again, is HUGE considering his expressive language sucks. He is using his vision better, and uses his strategies to finish his work. He can identify most letters and is working on finding them in complex backgrounds.

The most favorite and exciting to read was how well he was doing and how much he has improved in his gross motor skills. At the beginning of school ( OK in November) he was walking 750 feet without assistance, and 250 feet with one hand assist. ( They measure by 1000 feet) and in the 1000 he had 2 falls. In Feb. he had 1000 feet independently.

A functional speed of walking is 50 feet in 13 seconds. So his goal was to hit that functional speed. He walked 50 feet in 63 seconds. ( this was his baseline) He is slow. In November his speed was 50 feet- 27 seconds. So he improved. In Feb he did 50 feet- 20 seconds.

He went from staggering 3 times in a 100 feet trial to falling or every 500 feet with staggering around 100 feet. So he is still unsteady but he is able to correct most of the time . Some games he plays is Simon says, hokey poky, ball, and jumping. He does need stand by assistance in MOST gross motor games.

So that is Tyler. I feel bad he doesn't have any playmates but what do you do now. We are so proud of him and all he does. He is so cute. He loves the bus and he loves going to school. I am so happy with the improvements we have seen with him and his shots and casting. He is due for more in July.

Ty is doing really well. We are proud of him. And we think he is really cute.

*scroll down for a giveaway and SIGN UP!!*

A few conversations I have had this week!

I have had a few very interesting conversations the last few weeks about education and the "right" place to place Tyler for Preschool. It is just preschool and I know he won't learn how to do times tables or even read in preschool so I shouldn't be to concerned. WRONG!? Though I know that he won't be solving world peace of even the health care reform problem it is important to get him the in the right place to get the right services so that when he is 8 he can solve those problems (Sarcasm noted!)

When we moved to Arizona we were not in the school system so Early intervention was all I had to set up. It was a maze and once I figured out how it all worked and was tapped into resources the maze was not so bad. The services were pretty good and when cuts where made I wanted to speak up but nothing was cut of ours and we knew we would have it much worse someplace else.

Once we got into a place we liked we stuck with it. We have been at Coester Cares for over a year and a half. We like it. We have gotten so that Ty is doing so well with his therapist and never cries. Though Jackie and him have stubborn fights a lot! They are a awesome support system for me and a great team for Tyler.

Arizona long term care was amazing and the transition into preschool was pretty uneventful and we learned a lot for year number 2. First year of preschool was what we felt a trial run for this year. We looked at other options and thought of the school for blind children but made a different choice and got him in a different class. The class this year is amazing. It is exactly what he needs.

So our choice to move to Utah was not as abrupt as it seems. We had jokingly talked about, prayed about and then it was presented and we jumped at the chance. Yes we are moving quickly, but most everything is falling into place.

One of my major responsibilities is to get Ty in school and figure out what services and where to get them is my "realm." Doctors are hopefully going to be our old favorites: Marissa, Tim, Dr. Walker, and Dr. Larsen. We are adding Dr. Gooch and possibly a developmental ped and MAYBE a neurologist is the above favorite of Tim and Marissa wont' drug our child!

Those were the east set up. Its been the SCHOOL that has been the hardest. Conversations have gone like this:

CALL one:

Me: Hi, we are moving from another state and need to know where in the district we will be attending.
Lady: What grade?
Me: Preschool. He needs the special needs preschool and I am not sure what school has them and I would like to know what school we would be possibly attending.
Lady: Um yeah we don't give out information like that.
Me: Um could you transfer me to the preschool department.
No one was there to talk to. I left a message.

Message was returned the other day.

Frank: What information were you looking for?
Me: What type of services are offered in class?
Frank: well you know he has to qualify right?
Me: yes we are currently getting services here in Arizona.
Frank: Do you know what his services are called
Me: Yes he gets all of them OT,PT, Speech and vision and music
Frank: Oh yeah he would get services.
Me: where is the preschool closest to us?
Frank : I don't give out addresses. We don't know you.
Me: Um I just want to google the vicinity so I know how far we are busing or taking him because I would like to look at the school for the Blind.
Frank: You know you have to qualify for that?
Me: Yes. Do you know what the qualification's are?
Frank: bad vision.


Today my conversation went like this:

Blind lady: I heard you wanted to know about preschool.
Me: Yes. My son needs vision services
Blind Lady: How do you know?
Me: He is almost legally blind and has nystagmus and ROP
Blind lady: Oh yeah.
Blind lady: Do you know your district
Me: yes, they have a current IEP and have all the stuff they need to tell us what we need but I want to know what services you have
Blind Lady: Oh well we won't tell you what they are until we know what we can give you.
Me: Where is the preschool.
Blind lady: We cant' give you our location.

I said thank you.... and hung up.

Coming from an education family, I fully plan to support public education. I also know that as a parent that the teachers want you to be involved. I love to know what he does in school so we can talk about it with him and ask him questions even if he doesn't answer us back. WE excitedly get into his book bag EVERY DAY to see what is in there. I want him to succeed and want him to have the best possible chance to do that. But just tell me the address so I know if I am busing my child 45 minutes in rush hour traffic that may or may not turn into 2 hours.

I am not going to stalk and steal a baby with issues. I have one of those. I just want him to go to school and be in the right place for him.

I have felt dumber by talking to some of these people!

So, what we have learned. Ty will be attending the elementary just down the street. They just built it and it is brand new. Miss Holly is the teacher there. ( I dragged it out of the guy when he realized that I knew what we needed etc) The blind school may still be an option but we are going to be looking at if he gets 4 days and how much speech. Speech is HUGE!!

Other conversations have been about health care that I will leave to YET another post!

Moral of the story... Don't ask questions about your child's education. They might think you are a stalker!

Lets go to the ZOOOOO!!!

* Sorry about the lack of correct sizing of the photos. I still wanted to make sure they were here for journal purposes.... click if you want to see full size and not cut off. Oh and the white stuff is sunscreen and in editing purposes have shown up. It was not there in real life.*

Yesterday Dallas thought we should take a totally random and fun trip to the ZOO!! We had a lot of fun and it was totally random but we had a great time.

The Phoenix zoo is privately funded so they try to keep the "natural" habitat of the animals. Not sure how natural it is to have a animal caged but they did a great job of keeping the park clean and it was very nice. (The Zoo in Salt Lake seems much better set up for kids who can't see so hot. Guess we will have to go see it in June.)

Because we didn't plan ahead to well we had to eat first thing when we got to the Zoo. We ate and got all sun blocked up (because we were in the high 80's) and headed off. First place we stopped was the Giraffe. It was close up for Dallas and I but we weren't sure exactly if Ty saw what we were seeing. He was blending with the background really well. I always keep some flashcards of animals in Tyler's back pack and decided I should pull them out as we see each animal in case he can't fully see them. He would point to the animal, we would show the picture. He would answer something back and we would ask him if he was done before we moved on. It was a awesome learning experience for him ( and us.. or me, on how to help him with his vision.) We were determined to get him to see some of his favorite animals ( the ones he does sounds and gestures/signs for) So we headed off to see the Rhino. The Rhino was close enough to see. Ty pointed and then he got scared. But he could see it.

The Rhino was pretty cool. He was huge and there wasn't much that you could have him mesh with in the back ground. Ty held on to the card and "talked" to us about it as we moved on.

The lion was out sitting on a rock but he was to far away and looked to much like his surroundings to really see him so we showed him the card, pointed, let him look around and waited till he said he was done.

This continued till we got to the baboon cage. The Baboon cage they were close enough that he could see them. In fact they were right up against the window. Once the crowd thinned out enough we were able to work our way up to the window and see the baboons which we called Monkey's given that they are in the same family.

Ty was pointing, talking and telling us that he could see it. He was showing me and his dad where the "monkey" was. He was very excited. ( and notice he is wearing his glasses. He had NO problem while we were there!!)

Another shot with him watching the Monkey. *no that is not blood on his hands, its pizza that he wouldn't let me wash off.... pick you battles wisely people*

The baboon that was up to the window. He was very content and it was pretty cool.

The next stop we went to the monkey cage. This is a place that they run free and you are on a trail with monkeys going all over above you. Being told to watch out cause they pee on stuff and poop on ya. They were in the trees, on the ground all over. They were a little far but we hoped Ty could see them.

While there a really nice looking zoo keeper lady was standing there and I asked if there was any way or any exhibit that we could get up close so that Tyler could see some of the animals we came to see. She told us there was an off exhibit of little monkeys she would love to take him to. She said we would meet at the elephant exhibit.

We got to the elephant exhibit kinda stunk. Literally. They had ONE elephant behind a HUGE fence and you couldn't see it. We were bummed. Then the zoo keeper girl showed up and took us to see these monkeys.

Here are the up close monkeys that Ty was able to see. There were three of them. They lived in a cage off the path of the regular exhibits. They were there because one of the monkeys had seizures.

We were really really close. We were right up to their cage where we could put our hands on the cage and everything. At first Ty was totally fine with the monkeys and they crawled around us and he was able to see them up close.


But then the monkeys started talking and making noise and he was all about having Dad save him. Ty is a little sensitive to the sounds of things. We are still working on that one. But he gave a huge hug to Dallas * which dad NEVER complains about* and he watched from afar. I was enthralled with these little monkey's. They are like the monkey's on friends. That people think are good for pets.

The last photo is the monkey that was the reason they were separate from the other Monkey's. This monkey is "different" and has seizures. He would be going about his business in the other cage and fall off while people were watching. They needed to keep him safe so he was moved into this cage. They have nets on the bottom to catch him. They have to put friends in with these kinds of monkeys because if they are alone they tend to go a little crazy. It was interesting to see that this special monkey came right up to Ty and just stared. That little monkey totally captured my heart.