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?

How do I raise my child?

A Mormon family in Utah has been putting their son’s journey of a terminal form of Muscular Dystrophy. The boy, Mitchell, was doing great. But quickly his position changed and they found that his disease was killing his heart and fast. While working on getting an LVAD, they documented his last  few weeks, and ultimately his last few days and hours. His father documented the journey in amazing and heart wrenching photographs. What I wonder, was how this mother was and did, raise her child knowing and teaching him about dying? How did she do it with strength and dignity? Of course, I wasn’t there behind closed doors, but the questions still looms, how do you raise your child to die?

Today we had an opthamologist visit for Tyler. We truly do love our eye care team and Tyler, especially, LOVES his vision therapist and teacher at school. He calls her Jenny the Pirate. We had a terrible, TERRIBLE visit with an optometrist ( there really is a HUGE difference)  a few weeks ago but we knew that we just needed it for a  few things at school. But this doctor, Dr. S, is different. He is a retina specialist. He deals with ROP and kids like Tyler. He is very good and very through. He is also very bold and very honest. He never sugar coats things and we are able to get good information for what we need.

Tyler hit a growth spurt the last few months. He really has put on some weight, and grew bigger. While that is a blessing for us, it has wrecked some havoc on his body and his conditions. One thing I didn’t expect was that his eyes would be affected by him growing. This recent growth spurt has caused him to  become more near sighted. We knew that as he got older that he would have a harder time seeing. But I thought when he was 18 or 19 or older. Not 7 or 8 or even 50. The reality is, I never thought he really would get “worse.”

His script went from -13 to -16 in a year. Correction doesn’t correct his vision to even legally blind. He is amazing at compensating and he has great “functional vision.” We have done all that we have known to do to keep him seeing. We make sure that his ability to get what he needs is done. But we do not know how to stop or slow down the progress of his ROP and his nearsightedness

(This is what 20/500 vision is. Tyler has this picture WHEN CORRECTED!! So WITH GLASSES)!

For Tyler, we still see the opthamalogist every 3-4 months. They are still worried about his retina’s detaching and him going totally blind. The older he gets, the better he will be at telling us that something is wrong with his eyes but ultimately it will be with the follow ups that we catch it as early as possible.

What hit me hard, was how do you raise a child to become an adult that will not be able to see?  How do you teach him about all the wonderful things that there are in the world, yet he sees none of them? We are teaching him a song about all of the wonderful things that Heavenly Father has given to us, yet he is denied seeing them?

For today, I am sad. Today I look at photographs taken from amazing people, who see and takes photos of amazing things. I want to pack them all into a short time so that Ty  can see EVERYTHING. Experience everything. Even with the  limitation physically, I want him to see everything he can. I don’t want him to lose what vision he has.

What I selfishly, don’t want him to not be able to see, is me. I am selfish. But he is my baby. I want him to know who I am.

How will I  raise my sweet, amazing, miracle to grow up blind?

Liebster Award- Special Needs Edition

This Journey in our life nominated our blog for a Liebster Award. As I was browsing through her blog I realized just how valuable her blog will be to us! Her daughter is visually impaired from none other than the dreaded ROP!

In participation with the official Liebster Award rules, I will get to share 11 random facts about Tyler, and then sharing the answers to Rachel’s questions. I hope you guys enjoy the read, learn something new about Tyler and get to know more Special needs parents!

11 Random Tyler Facts 

1. If you read him a book and he likes it, he will have it memorized. Annoying, but it tricks people into thinking he can read. Sneaky toot! ( But he can read, just not all some thinks he can!)
2. Holidays are HUGE for him. He loves to have parties. So much so, that dinner every night is a special tea party in which we all get to take “Nibbles.” He also knows when all the major holidays are and asks frequently what we are doing for them. 
3. Tyler doesn’t drink anything but Dr. Pepper or Coke. Basically anything without fizz makes him gag due to sensory issues. We try, but after getting caffeine every day of your life for a year, it doesn’t phase him. 
4. Tyler LOVES jokes. He makes them up daily and about everything and laughs so hard and so long. He loves making people laugh. 
5. He loves movies. He goes back and forth between Disney Junior everything, to Sesame Street to the dreaded Barney. I am fine with all but Barney.
6. He has weird names for everything. He calls his school the flying fairy school. My mom is Grandma the Old Lady. I am Mommy the Kelly the girl. He was Tyler the professor for well over a year. He is now Tyler The Brown. And we don’t get to deviate from that name without him correcting us. 
7. Ty loves Goofy and Mickey Mouse. 
8. Ty thinks he is a pirate. He thinks he is Jake the Pirate and that his Vision teacher, Jenny, is also a pirate. He talks like a pirate when he talks about Jenny.
9. He loves school and loves to learn but really struggles and gets angry and says he cannot do it any more when he has to work really hard. 
10. He is a great bowler
11. He LOVES to ride bikes and loves to have friends and loves to be where people are. 

The questions that Rachel at This journey Our life asked are below: 

Questions for nominees to answer:
1.  When did you embark on your special-needs parenting journey? (share your child’s diagnosis story)

         This will be the quick version because we have it written out ( twice) by both of our perspectives soon after it happened. But around May of 2005 we found out we were pregnant. I have endometriosis and was told I would probably not have any kids or would have trouble conceiving but he was a welcomed surprise. After the shock wore off, we realized we would be getting a Christmas baby and jammed a semester of school in while I was pregnant. I had complications from the start and the pregnancy was VERY hard. We found out the first of September that we were having a boy and less than 21 days later he was born. He was 25 weeks and 3 days.  He suffered a IVH grade 3 and 4, hydrocephalus, ROP and a spent 93 days in the NICU. Since, he has been diagnosed with Cerebral Palsy, hydrocephalus, is legally blind and has some sensory issues, developmentally delayed and has speech issues.  He is now almost 8 and in the first grade. 

2.  How do you balance spending time with your other (non-special needs) children? (if applicable)

      We do have another baby. Lucky for us, when we decided to have another baby we had massive secondary infertility issues. At the time, I didn’t think it was “lucky” but it has allowed me to be Grayson’s mom because Ty is in school a full day. We take Grayson with us to all of Tyler’s appointments and he loves being with Ty. He tries to keep up with him and wants to do everything. I often feel a little guilty that I don’t get as many activities to do with Grayson because with Tyler we had therapy 3 times a week. We had people in the home for therapy and fun music classes and we don’t have those with Grayson. Grayson is also a very hard baby. He tends to be a little more needy so I do feel a little frustrated when I don’t manage everything just right. But we are happy he is here. And as far as adding more to make me have to manage better, that won’t be happening. I had a hysterectomy in December, so I get to just relish the last of my babyhood with Grayson and enjoy the journey. 

3. Share an act of kindness someone has done for you or your child.

    The biggest one for us was being nominated for a Make a Wish trip last summer. Tyler wished for a trip with Mickey Mouse on a pirate boat. Because of his visual impairment the trip was just what we needed.

 But, on a even smaller but more significant act of kindness was when Tyler was invited to a birthday party. The little boy, Jake, was in our ward ( our church boundaries) and he brought an invitation over to our house and Ty was able to stay there all by himself. He was welcomed in by his mom, Christi, and he had such a good time. He has never been invited to another party and it really made my heart happy. 

4.  What is one thing you want people to realize about your life as a special needs parent?

     We have a few people in our lives that have Chronically ill kids. And while we see the struggles they live with they are not totally disabling conditions. There is no damage done to their brains or their eyes. They can, and most likely will, go on to life a fairly normal life. With being 7 and still not able to use the bathroom, we don’t have any idea how he can live on his own. He can’t make his own cereal, he can’t take care of himself while we run to the store. He can’t change the station on the TV to something. I am doing all of it for him. I dress him, change him and entertain him. Even while riding a bike, with his visual impairment I can’t just let him go. Someone has to be there to watch for cars. The “normal” things are just not possible for us.  While most things are just normal parts of life, most anything outside our daily lives have to adapted. People don’t always want to make the changes with us and we are left out. A LOT! Raising a child with extra needs is lonely and there isn’t much support by means of others not playing the “my kid is sicker than your kid” card. There are very few that get it. And don’t judge what you don’t know. There is a lot of judging when it comes to our choices at parenting . 

5.  In what ways has  raising a child with special needs affected your relationships/friendships? 

You tend to lose your “normal” kids friends. But you gain, and tend to gravitate to a few really great friends who are walking in the world you do. My best friend, Stephanie, lost her child but still seems to understand what I am feeling and why I am feeling those things. She is always there for me. And my besties Amy, oh what a life saver she is. Her husband and my husband were best friends. They have a child with Autism and I NEVER feel like I am alone when I know she is a call or a message or a Facebook chat away. 

As far as my relationship with my Husband we have really had to work at making it work. We were told the night after I saw my baby for the first time, that this would either make or break our marriage. We have had years where everything is awesome. There are times we really struggle. But we have found we HAVE to date. We need to date more than anything. The need to have time together, talk and make the right choices for our whole lives has to happen but the only way it does is by dating. If not, that is when it is REALLY hard.

6. What brings your child the most joy?

EVERYTHING. Ty gets so excited about the smallest things. He loves movies and buying a new movie would make you think he just won the lottery. Bringing him home a soda from the gas station is like Christmas. He is seriously such a awesome kid!

7. If you could describe your child in three words what would they be?

Loving, Smart and Stubborn

8. What aspect of your child’s special needs has been the hardest to accept?

His vision is really having a bigger toll on us. Realizing that he can’t see what we thought he could and that more things needs to be adapted than we thought has been really hard. Some of the things said in his CLVE were so hard to hear. The other part is accepting that we JUST might not be able to have him life on his own and be married with kids. But that is far in the future. For now and for the current time, his vision is the hardest. 

9. If you and your child could take a dream vacation where would you go?

We DID take a dream vacation, but knowing how much we loved it we would love to go back on a Disney Cruise. There are many things that we know now that we can make his experience even BETTER by doing it again! 

10. What’s the most important lesson your child has taught you?

The biggest lesson is love. He knows no hate at all. Nothing. He understands being left out and being sad, but he doesn’t understand when people are being mean or saying mean things. He doesn’t care. He just loves. Innocently loves. It also turns into innocent faith. 

11. What advice would you share with a parent just beginning their journey of parenting a child with special needs?

I would tell them that no one knows that your child will do. No one knows what things will happen. No textbook will tell you anything. Ask a lot of questions. Read and read and read. Cry when you need to. Take a break when you need to. Take a break from therapy if you need to and most of all, you are doing the best you can. If other’s want to judge you, let them. Your shoes are full. They are uncomfortable to wear and they aren’t always cute. No one wants to wear them. So do the best you can. Oh, and it’s OK to have a bad day. It’s OK to feel negative and it is OK to be a little angry and hateful and bitter for a while. It gets different and easier to deal with. 

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. 

Kindergarten IEP

As of this week, we have officially IEP and transitioned into Kindergarten. School is still going on for a few more weeks but I had requested in his original IEP to have a review to make sure his goals were hard enough that he can be as "caught up" as possible come kindergarten.

Cognitively and academically Ty is doing very well. He is what they would consider "ready" for kindergarten. He doesn't struggle with learning and wanting to learn and he has a lot of motivation being around other kids. He is even reading about 50 sight words at 100 percent. His Vision dude, Brandon, has worked really hard to get him to that point. He is doing well.

He will be in a transitional kindergarten, which is "normal" curriculum for kindergarten in a setting that is smaller and includes his therapy in the routine of the school day. That way he won't be missing part of his day to leave for therapy. It also means he doesn't have to get mad because he is away from the kids!

He does struggle with Physical things. He has officially graduated from actual PT and is just getting adaptive PE. He still have goals that he has to reach but because he is actually "functional" and can get around the classroom that is all they legally have to work for. It doesn't matter that he might have to have adaptive equipment to get around the classroom once they show they can maneuver the state is GONE. ( Awesome system)

OT is another area. He is FINALLY making purposeful movements to start writing. He scribbles in the same direction as a line drawn but it is really hard for him to have control of his fine motor skills so he gets mad fast. His goals are hard for him next year in OT. The OT did comment how amazing it has been in the last 2 years to see Ty going from NO words to full on conversations that they understand 100 percent. He even starts the conversation, is polite and is a very funny kid. ( Who knew!)

Speech is still going to be on going. He struggles with some phonetics. He puts his mouth in the wrong place on a few sounds and he still breathes in on some sounds. But while he is going a mile a minute in what he has to say you don't notice until you really listen. But he is doing really well and we just added a few goals to get that done.

Vision is our biggest hurdle. Weird that we really don't notice. I think because our awesome vision lady at the start ( Aften!) taught us to bring his world to him. So we did. Outside his world it isn't "blind" friendly. Brandon is working really hard at getting him able to read. He will have a few devices that he will be able to use to help him see his books better and he will be using an Ipad on a regular basis. They are also planning on using and starting the starter set of braille with him.

We have a lot of really hard things planned for him next year but he is doing really well and he LIKES school. He loves it really. We just want it to be as easy as possible so he continues to like it.

The Blind Driving

When you are pregnant and have a kid you dream of all the milestones that will be coming in the next 20 years. One big one is driving, drivers ed and your first car.

Ty has nystagmus and ROP. His ROP is severe. Though it didn't leave him totally blind he has severe vision loss. His script borders legally blind. Even at 4 we don't know the full extent of his vision loss. The nystagmus doesn't help. Because of the movement it makes LOTS of problems for the vision. It makes it so that driving is almost impossible.

Recently, an article and news story came out about a car that is being made by Virgina Tech that is giving hope to the legally blind. Giving them a hope for DRIVING!

With a new technology called "non digital interface technology" people with vision impairment and blindness have been able to drive.

It uses a series of vibrations, signals and sounds to tell the blind person where to turn and how to stay away from other hazards in the street all while driving. The foundation for blind people were impressed with the showing at Daytona last week. A prototype vehicle is going to be made by Ford using a Ford Escape which will be equipped with the new technology and will be shown in January.

I think it is rather interesting and I wonder in the next ten years what technology will be coming up that will help kiddos like Tyler. Can you imagine the independence he will feel with the ability to drive!?

Can you imagine the possibilities?

Talkin' Tuesday

I have found a few new blogs this past little bit and I decided that I wanted to participate in the Talkin' Tuesday. It really got me thinking today.

The Question of the week was " What has change since having kids?"

My answer : My dreams changed when I had a child. Tyler has cerebral palsy. Everything changed.

Though my dreams have changed there is something about his spirit that will NEVER change. For that I am thankful.

When I was pregnant I thought of the time when we would have fun 4 year old conversations, him crawling and walking when he was one, jumping on the trampoline with his cousins and laying on the grass watching the clouds or stars or even fireworks.

All that changed when we had him early. Change doesn't mean they didn't/haven't happened but it means they are not how I envisioned them in my mind.

Things changed and new ideas and new goals and dreams emerged.

Funny conversations are not full on conversations. Little words now and then that make the day fun and funny. But the WORDS make it funny because there is no combined or back and forth conversations. The words that do come out are GREAT and every single one of them is WELL earned.. for mom and child!

I definitely took the idea of communication as something that "just happens" and appreciate the words SO much more!

The crawling and walking thing was more of something that would happen so the " five year plan" would play out JUST like I had it in my head. You know, the one where you have a baby, they advance and 2 years later you have baby #2 and are done. You buy a house, buy cars, save for their education and go on fun trips to Disneyland. Instead we got therapy, brain surgeries, brain damage and LOTS of medical debt. The " five year plan" kind of went to crap but we are SO proud of the work he is doing and the advances he makes.

Jumping on the tramp... oh vey! Yeah well when you can't stay on your feet jumping up and down is NOT going to happen. I try to shelter him from the things that I KNOW he can't do but want to or we find a way to adapt. Currently our adaptation is to have a trampoline in our living room. ( No I am not kidding!) But what I also have is a wonderful Niece who tries to include Tyler in EVERYTHING. Lexi is SO cute with him. The neighbors girls do the same thing. He is obsessed with the trampoline at their house and September and Ariel are amazing for helping him jump ALL the time.

Laying on the grass watching the sky. I envisioned warm sunny days watching the clouds go by, laughing at the shapes in the sky. I envisioned 4th of July, sitting on the grass saying "OOHHH and AWWW." Instead Ty can't see them. He has never seen a bird, never seen an airplane fly by ( he Hears them but not see them) he can't see the sun or the moon.

We don't know what he can see but there isn't any awwing from him. His sensory issues with sound prevent it. But we can give him as full of a life as possible and point them out even if we can't see them.

Time consuming, love consuming and all consuming. That is Tyler.

What payment do I get? Love, kisses, hugs and admiration. A shadow. A buddy and most of all an amazing son!

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!?

ROP and Vision 2010

Today was Tyler's eye appointment with his previous Opthamalogist Dr. Larsen. It has been almost 2.5 years since we have seen this particular doctor and so Tyler has done some growing and changes. But not to many growing and changings that we are horribly concerened.

Most of the appointments for him right now are maintenance appointments. Meaning we have a baseline that we must keep in order to be deemed healthy by that particular doctor and to extend our visits from once a year or 2 times a year to longer. At each specialist there is something in particular they are looking for.

The picture above is Tyler waiting to do the cue cards that help identify what acuity he can see at. These are pretty cool cards and Ty had a great time pointing to the stripes. As they get smaller together and harder to see you see him pointing at the pin hole that they tech looks through to see if there is actual recognition that they see it. When you see that you have a few more cards to go and he isn't seeing them sometimes you feel a little more sad. But Ty did really well. His acuity is somewhere around 20/260.( He can see an object at 20 feet that I can see at 260 feet) That is bad... really bad

The acuity charts are not done in the exam chair. They are done sitting by me in a regular chair. Tyler is then moved over to the exam chair. And yes... this is really what he does. He gets so so so so sad. And he knows what is coming. They put on a movie for him where they do the eye screening. So as you can guess, he can't really see that far. But we moved fast when he thought Lighting McQueen was Roary the racing car.

A long with the idea of the REALLY in depth exam you have all the scary equipment you would see otherwise in a eye exam room. But to a blind 3 year old you can't help but want to be curious and scared at the same time. So I usually let Tyler explore his surroundings as we get use to them, he lightens up until the doc comes in.

The Moran eye center is one of the best in the nation. they have all the high tech things for them to use and for us to get the best care ever. The above piece of equipment helps test glaucoma and the below helps put the images on the screen according to what the person can see.

Along with all the instruments, computers etc, we sat right there while they dialed in and pulled up Tyler's last CT scan he had at a different hospital, the dictated report and all the information they needed for Tyler.

Now for the boring but mom finds interesting part:

The image taken is me sitting in the exam chair and with the no zoom and no editing in any way picture is what Tyler can see. Meaning with his glasses ON he can only see objects 20 feet ( or the space between the chair in the eye room and the chart) that are this large. Anything smaller he can't see. His prescription is a -9 and it hasn't changed in a while.

I still didn't get how or what he saw or why it was so hard for him to wear his glasses. So settle in!

My glasses are -5 and -6 respectably but I have a astigmatism which means I don't have clear vision and it is kinda messy. I can't see pretty much anything. I see shapes, sizes, outlines. I see what Tyler sees with his glasses.

His eyes are not being correct to see what you and I see. His are being corrected so he has some vision. He will not be able to see "perfectly" but will have to have what he sees enlarged in front of him. He needs it enlarged 260 degrees or almost 300 times larger than regular print.

The exam to get his prescription is VERY traumatic, his eyes get dilated and then he has to be literally held down with his eyes pried open. I am the one holding he is the one moving and the doc is the one dodging the bullets of his feet. It isn't pretty. Ty is WORN out over the exam. He can use a magnifier but really that makes his brain work harder to see.

When I take my glasses off I can see my hands up to a certain point then they go fuzzy. That is how his are but his fuzzy if closer and his fuzzy is harsher. So from ten feet away the only actual thing he can see is the Door handle the rest is just a blur and an outline.

Ty's doc is getting some stuff ready to send to his school for better modification for him. And now we can answer some questions.

Like why at Chickie cheese when it is loud and a lot of people and things going all over can and does he get overwhelmed? The answer: because he can't SEE what is going on. His ears, which are fine, can hear but his brain and eyes can't see it.

Why when he gets to the top of a play ground place does he freak out and won't go down the slid? Answer: He can't see the ground. He doesn't know where he is going. He can't see me, he cant' see familiar.

He doesn't like to wear his glasses because we have always brought his world to him. He has no peripheral vision at all. He only has his little big of central vision that is there. It may get a Little better but most generally this is it.

Long term: He will NEVER drive a car.

* These are not NEW findings for us as parents, just better information as to how and what he sees. He even Showed me what he could see using what crappy vision I had. It was more for others who are still "learning" his visually extent."

Vision for 2010!

Tyler has a disease called Retinopathy of Prematurity that only effects children that are born BEFORE 32 weeks. Low Birth weight and gestational age play a HUGE part in this disease. Some are only mildly effected but for us that isn't the case.

Tyler was diagnosed close to his go home date with ROP stage 3 PLUS disease. This advanced stages of retinopathy was "discovered" before retinal detachment so he does have some sight. He is at risk for retinal detachment for the rest of his life.

Eye exams for kids Tyler's age are not pretty. Because he has them often he HATES them. He screams and kicks and freaks out. His eyes are dilated almost every time and we rarely get any real answers. Meaning because of his other delays ( especially in speech) we still do not know what he CAN see and what he can't see. It is basically a educated Medical guess.

Visual impairment is something that we feel is a huge mystery only because we don't know the extent of what he can and can't see. Tyler has nystagmus as well that is from head pressure that has ruined his optic nerve. He also has a coloboma which makes his eyes let in to much light. It can make your vision even worse. ( the picture above shows that his special eye, which is a coloboma)

For those who are interested ( or don't think that we have it "bad" or they have it "worse") or have questions regarding his ROP please email me or let me know so that we can bring back answers for you. His appointment is tomorrow at 1 if you would like to go. Tyler needs to be seen every 4-6 weeks at this doctor so more appointments will be coming. His Doctor is more than happy to have visitors with LOTS of questions.

ROP continued

During our course of therapy with Tyler we were given a PIP girl. Her name is Aften. PIP is the parent infant program through the state deaf and blind school. This therapy was not a hard one to get and we had them from the second we left the NICU.

Aften was a LIFE SAVER! She has no idea how much she helped me. Aften and I still keep in contact and she is raising 2 very special girls as well. They both have hearing loss. Ironically she worked with eyes and her hubby works with speech so I think they have their grounds covered.

The pip program was helping us parents LEARN about our child's vision loss and how to maximize what they have to help them better them selves and so the can learn to use their other senses to catch up and be functioning in society.

So many things are dependant on sight and when that is gone or missing in some part or another so many things are messed up.

Aften gave me a book. It is a very small book. I don't even think she remembered she gave it to me. I still have it. this book has some AWESOME suggestions

Some things I learned :

1. Their world is so close to them to start. Even if they can't see well babies in general get everything brought to them. Babies with visual impairment will see it different. Use their hands more or put things in their mouth longer. Its the only way they can "see" it the way they need to.
   
2. A routine is very very important thing for them. Not just routine in what they do but routine in where things are. Ty hasn't needed this till recently but he needs to know where his stuff is. If we can find what he wanted he has a few meltdowns. But overall he knows where his stuff is so he can get around his world
   
3. READ READ READ!!!! Tyler didn't really care much for books till recently. Now he loves them But when he was younger we had touch and feel books. Tactile stimulation is amazing for them. We still do all we can to find books that Ty can see ( big print) and things that he can touch. There are also ways that you can turn your regular books into tactile books.
   
4. Learn what they can see. In Arizona Ty LOVED the light boxes. he loved anything to do with light and light switches. He still does. It worked well for him
   

Now that he is older I have a hard time explaining to those around us what he sees. We are currently trying to explain his sensory issues and because of one of the senses being broken we see more issues in other ways. Having a support system willing to help be flexible is so important.

Sight is such a huge part of sensory. I would love to be able to have a family member who wants to learn more come and see some things we do for sensory and to also have others sit back and try to understand. We know that we can't control everything but we have so many things that will help him be at ease and behave better.

ROP is hard. Its a lonely world for mom and baby! I am thankful for people like Aften coming in to our home, playing with our child and getting him to laugh~

* PS I still remember how hard we got him to laugh at the animal bowling* your rock AFTEN

ROP

Retinopathy of prematurity. It is a dreaded word. It is one of the leading causes of blindness in babies despite more than 60 years of research. Sixty years. It is also a disease that effects every child differently and no one can really predict who will have the worst of the worst. Even a baby born at the exact same gestation can have very different results.

So what is ROP?

It is a disease that affects prematurely born babies. It is NOT found in full term infants. It is thought to be caused by disorganized growth of retinal blood vessels which may result in scarring and retinal detachment. ROP can be mild and may resolve spontaneously, but may lead to blindness in serious cases. The growth of the abnormal vessels causes the retina to contract and the abnormal vessels causes retina detachment which then leads to blindness.

Who is at risk?

• Gestational age and low birth weight : The lower the infants birth weight and gestational age the more likely they are to develop ROP AND have to have it treated.
  
• Supplemental oxygen: Though the NICU has increased in its oxygen treatment the need for supplemental oxygen in the little tiny babies is just a fact of life. The use of new technology and younger gestation babies being born still requires oxygen assistance and therefore still at risk for ROP.
• Vitamin E deficiency: though this is still being looked at in medical trials some infants have been treated with higher levels of vitamin E and the levels of ROP has been lower.
  
• Race: Those darn little white males strike again. They are at higher risk for developing severe ROP that results in retinal detachment than any other race.
  
• Indomethacin: The meds used to help close many pre term infants PDA have also been linked to increasing their chance of SEVERE ROP.
  
• Light levels: In the last few years many NICU's have "turned off the lights" so to speak. Keeping the lights low and sound levels down have seemed to decrease the ROP levels.
  

Other risk factors include: Brain bleeds or IVH's, blood transfusions, mechanical ventilation, and anemia. All factors that Mr. Tyler had. In fact the only major risk factor he did not have was the PDA meds.

So what are the stages of ROP?

stage 1: blood vessels not completely developed

stage 2: enhanced grow of blood vessels (more than normal)

stage 3: scar tissue, blood vessels affecting the vitreous eventually + sign: additional observations (bleeding, well filled blood vessels, rigid pupil...)

stage 4a: partial retinal detachment (vision loss) by traction of scar tissue in the vitreous

stage 4b: partial retinal detachment involving area of best vision (severe vision loss)

stage 5: complete retinal detachment (no vision)

The below pictures shows what zone is effected.

• 

Tyler was diagnosed with zone 1 stage 3 rush disease or plus disease. Meaning they saw the change from a lower stage of ROP within just a few hours. From his first exam to zone one was about 72 hours. We had him in surgery quickly!

ROP has damaged Tyler's vision to the point of him being on the verge of legally blind. He is such a great kid that he compensates for so much of his vision loss. We have been lucky that we have had such awesome therapist for him. Aften and Martha were great with Tyler. His functional vision is still undetermined.

One of the things that his damage caused was nystagmus and we have the "cool" eye of a coloboma ( due to surgery/dr error) but it is his special eye that hold super powers.

More on those 2 conditions later. Tomorrow I have some suggestions from our friends Aften to engage our visually impaired child!

The Preschool way to Party

One downfall of attending a special needs preschool is the lack of fun field trips and little shows they put on. This year though he did have a really cute teacher who put on a FUN little party for the class. I was kinda excited to go and see him and take pictures. My one "not excited" is that once mom gets there he is "all done." He won't let me put him down or not hold his hand long enough to get some GREAT photos. The few I got that were pretty good, he didn't see me come in the room. ( A HOORAY for being blind *HA HA*)

I woke up at six wondering in my head if my baby was even still breathing since he hadn't made his way into our room yet. ( A hooray for some full tummies at bed time.. more on that later) and promptly at 7 he showed up. ( OK not really. I went in to check if he was breathing and he was climbing out of bed)

Mornings are rough. He won't eat for about 30 minutes. He is picky in what he eats and today was no exception. He ate next to nothing. BUT we got his costume on and he was nice enough to let me snap some photos.

Next up was hitting up the COOL school and try really hard to get at least one photo of the hat and the fishing pole. ( Don't you love his waders)

He doesn't notice I am there in the class with him. He is off showing his teacher his fish. He can't see from where he was standing and I was standing in order to really SEE me. It was the sound of the flash that got him to look up. And it took a few seconds to get what was going on.

AND he caught me! He totally ran and ripped off the hat :) and headed to where I was standing. I was in Tyler prison. He would take me around his class and we would sit and sing. And then we were off.

While they paraded around the school they made a few stops. Once Ty walked in to the library he quickly reminded me that it was "SHH" And he went on his way.

Next stop was the principals office where he was sitting with his Mac and Ty signs computer :) and smiles really big for a picture that I couldn't take because he wouldn't let go of my hands. But we got him to hold still with his Aide named Pooh.

He wasn't afraid, but she wasn't mom so "the scared to death pooped my pants look... its just Tyler"

We headed back to the class to make Spiders and decorate a cookie.

And as the Visually impaired Cookie Inspector he was all ready getting down to business.

And in his too cool for school way he was letting me know that "that" was the cookie, and not a cake!

But the spider craft had to go unnoticed in photo blogging because he was having none of it. BUT ME, the mom, finished a mighty nice one!

We moved on to Books and then made a convincing run at pin the nose on the pumpkin. The other kiddos were blind folded. BUT in all our blind glory we just got to go for it.. Thinking we were gonna be the BEST quickly was dampened as he reached to be the highest one above the pumpkin.

The morning ended with a bang as Tyler was all done. We said good bye and packed our stuff and took a trip to The BK! Ordered a burger and ate some food. Then went home to watch Halloween Barney.

Ty has now gotten the concept of saying the sound T and holding out his basket with the full intention of getting a treat. So if you see a black basket and a handsome little man you better be passing out good stuff.

We spent the day making cookies and we are gonna be taking some to our loved families. We hope they are yummy and that they bring a Halloween smile!

Can't wait to see more from you, trick or treaters!!!!

* The sarcasm about my blind baby is only partially sad. We aren't sad. We don't know the extent and sometimes it is more obvious than others. He is such a trooper going through life unable to see well. We love him and are happy to learn more about what he can and can't see. Feel free to ask any questions you can think of and we will FIND OUT more!*