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!*

IEP 2010!

Tyler's IEP ( Individualized Education Plan) recently expired so I had the chance to sit down with his education team and come up with new goals and things to work on for the upcoming school year.

Last year Ty was really new to the school and we didn't know how he would do in a classroom setting like the one we had him in. In Arizona, Tyler was in a class where there were only 3 other kids. 2 were a lot more severe but had physical challenges. He was not in a "almost typical" class there when we moved.

In Utah he was back in a typical ( as typical as Special needs preschools can be) and he was not doing as well last year as he was this year. So the goals were made and he did really well. This year, his goals were made and I am excited to see how they will pan out.

To start the year Tyler has made leaps and bounds progression. When we left the school year there was no words. He was making some sounds but nothing that really resembled words. With a new speech person she is really wanting to push Tyler to make the leaps and bounds that she wants him to make. She wants him as close to kindergarten ready and she can get him.

Educational goals for Tyler are SMALL!! He is doing what he should be doing as far as cognitively as he works toward kindergarten. He is basically caught up. Including his ability to count by ten to 100!! So the goals that we have for him are all social. Getting him to play with others, initiating play, talking about what they are playing so that he can be more social with other people that he needs.

Other people involved in our IEP is a Physical therapist and an adaptive PE teacher. They are going to work on Ty's core strength. They are also wanting to get him in the habit of walking in a straighter line instead of a drunk straight walk.

The best and most exciting news is his vision. They want to teach him how to use a CCTV. It is a pretty cool device that is going to help him learn to read. By Christmas they would like him to be able to sight read 20 words. I totally and whole heatedly agree. I KNOW he can do it. He is a very smart kiddo.

The CCTV is small, lightweight and quite cool. I think my mom could use one. She is almost as blind as a bat!! The cost of the device is quite minimal so it is very cost effective for what it will do and he can use it for a while.

The OT and Vision people will coordinate some of their efforts and work on his writing skills and if writing isn't going to be an option then they will be teaching him how to type and utilities the abilities he does have and keeping him up with the rest of the kids his age.

I was pretty impressed and the only change I requested was that we don't automatically write off Summer school for next year. So in December we will be reassessing the goals to see if we can get him the socializing.

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

My Motherhood

4 years ago today I was sitting in a hospital room wondering what the future held for my new little family. Wondering what dreams were going to come true and wondering if I would ever get to take home my son. This day brings forth so many emotions. Not the anticipation of a happy, chubby, screaming child. But of sadness, fear, and extreme LOVE and faith.

Here is our story.
Four years ago I was laying in a hospital bed being told that I was going to have to deliver my son. I was told not to yell, scream, cry, or even throw up.

My only thought......It was to early……

September 20th 2005 : I had been feeling really yucky all day. I had been up for most of the night not feeling well. Having some strange cramps and some strange discharge ( hindsight it was my mucus plug) There was something not right. I called my doctor and the nurse told me to take it easy and not do anything, that I was being a paranoid first time mom. I stayed on the couch watching TV and doing homework. Dallas came home early from work and he had to go to a job interview that night. I decided to go to work. I was sitting at work so no big deal. He was going to drop me off and when my shift was over he would come and get me. Big Brother season finale was on and we were gonna watch it together. I got off work and he was not there yet. I called him and he was on his way so I decided to walk and meet him. BIG mistake. I started to cramp that evening but the Nurse earlier said that if there were less than four in an hour then it was not a big deal. So I was up and down with the feeling that I needed to go to the bathroom. I couldn't go but I really had to. I decided to eat something. It all came back up. I keep getting sicker and sicker as the night went on.

We decided that I had a bladder infection and that we needed to go to the ER. We decided to go to Alta View so that Dallas and his Dad could give me a blessing. ( At the time they lived close by Alta View) Dallas went into the ER and told them that I was sick and outside so if they could help me. They took me into the Labor and delivery part of the hospital.

I had the most wonderful nurse. Her name was Windy. She had me take a urine sample and put on a monitor. The monitor didn’t pick up anything including a heart beat. They had to get the doppler out just to find a heart beat. I could feel Tyler kicking the whole time and knew he was alive but they couldn't find him. They figured I had a bladder infection. They were not in a hurry to get things moving knowing a bag of fluid and antibiotics would send me on my way. But it was more than that.

I was having a baby!! And it was too soon.

The room went crazy. Nurses were everywhere and doctors were called. I was laying there so confused and thinking that it was to early. That he was not really coming and they were wrong. They tipped my bed upside down and started me on Magnesium to stop the labor and gave me shots of steroids to help Tyler's lungs.

There was nothing they could do he was coming.

15 week early.

It was to early. I knew deep in my heart that it was to early. If he came now he would not make it. I would go home empty handed with a broken heart.

They called maternal life flight to come and get me. They got there and I was to far dilated to take on the helicopter. For two hours they sat there discussing what they should do with me. At that point they called pediatric life flight to take my extremely tiny infant somewhere where they could help him. You see, we made the wrong choice. We went to the wrong place. We went someplace that didn't take care of sick babies.

With me staying and Tyler going they decided to do a c-section at that point and do it without being in an emergency situation. My water had not broken yet. His feet were hanging out. He was coming. The nurse put in my catheter and my water broke.

It became an emergency situation.

As I was wheeled into the OR I had to leave the love of my life behind with no idea how or what the future held for our son. We loved him so much but had never met him. He was too soon!!! As I moved onto the operating table from my bed I had another contraction. Up till this point I had no pain medication. The anesthesiologist decided that I had had enough and didn’t even wait to start putting me under. The last thing I remember was them draping my belly.

Waking up I immediately asked for Dallas and they let him in and he told me that they were working on him and that he had seen him and that he was alive. Dallas had been watching them do CPR on our little son. I then went back to sleep. On the way back to my room I remember being wheeled past my parents and everyone telling me that he was beautiful. They were going to let me see him before they took him to LDS or PCMC. They wheeled him into my room. I couldn't really see him because I had to take my contacts out to have surgery. But Dallas gave him a blessing and I KNEW that we would be okay.

That day our family would be started that day.

Tyler Kenneth Brown, my sweet, amazing and miracle son was born at 1:24 AM on September 21st 2005. He weighed 1 lb 11oz. He was 13 inches long. He was life flighted by helicopter to LDS hospital where he would stay for 30 days. He would have one surgery, and suffer from grade 3 and 4 brain bleeds. He was transferred to have a reservoir placed for Hydrocephalus. He would stay at PCMC for 63 days. He would endure 2 more surgeries( resevoir placement and ROP stage 3) and many ups and downs. He came home one day before his due date…. December 23, 2005.

In four years Tyler has had countless surgeries. ( all since being home)
*Feb. 14th 2006- Craniosynostosis skull reconstruction
*April 2006 Emergency Shunt placement
*May 2006 Emergency Shunt revision
* Feb. 14, 2007 Total skull reconstruction
*September 2008 Emergency shunt revision
* Dec. 2008 Dental work
* Feb. 2009 Emergency Shunt revision

We have done Physical therapy and Occupational therapy once a week for almost 4 years. Speech for 2 years. Music therapy for a year. He has started botox therapy where he gets numerous painful injections into his calf muscles. He had weekly weight checks for almost 2 years.

He has had a walker, 4 sets of AFO's, and every six months an in depth eye exam. He has six specialist we see on a regular basis and our regular pediatrician. ( and we were able to recently return to Dr. D and Dr. M) Dr. Marissa was one that I contribute my sanity to for one year and then some in the NICU and for weight checks.

He has had several diagnosis' including Cerebral Palsy, Low vision, craniosynostosis, hydrocephalus and nystagmus and a coloboma ( which is so incredibly CUTE!)

Despite all of this he is a GIANT. My previous post said I would change things. And I would. But only to make it easy for him. I wouldn't change the smile and the Spirit he carries with him.

He has changed my faith. He has instilled a knowledge of a Savior. He has instilled a power of unconditional love and a dying desire to make his life easier somehow. He has taught me that he will get up. That nothing will keep him down. The dreams of him running circles around my legs is just different than it was in my head. Now it includes limps, braces and slow moving circles but he was and has deified all odds. He has shown me that I don't know myself. I don't know love and that I didn't know how much he would impact me and my life.

On this day, four years after the emotions of the last 4 years are very real to me. I can still hear the beeps of the monitors and the feeling of anxiety when I see them bagging my dying child. I see them and hear them EVERY TIME I close my eyes. Yet I can't help but hug him every morning and think of how lucky I am. I can't help but cry when it is hard, and as I cry because it is hard for me I realize that it is harder for him.

On this day I can cry tears of thankfulness, devotion and complete and utter love for that little boy who makes my heart melt. For a smile that takes my breathe away...

For my miracle.

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!

Low Vison Awareness Month and Heart week!

******* This is going to be a long post, full of medical words and stuff***

Febuary is low vison awareness month along with a special week of Heart defects. Both are pretty near and dear. *

Low Vision is a very real thing for us in this house. So I would love to share a little about both to allow you a small glimpse into a Low vison child.

First of Tyler, due to his early gestation and low birth weight, was at risk for a disease and complication of prematurity called Retinopathy of Prematurity (ROP.)

Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness.

ROP occurs when abnormal blood vessels grow and spread throughout the retina, the tissue that lines the back of the eye. These abnormal blood vessels are fragile and can leak, scarring the retina and pulling it out of position. This causes a retinal detachment. Retinal detachment is the main cause of visual impairment and blindness in ROP.

Several complex factors may be responsible for the development of ROP. The eye starts to develop at about 16 weeks of pregnancy, when the blood vessels of the retina begin to form at the optic nerve in the back of the eye. The blood vessels grow gradually toward the edges of the developing retina, supplying oxygen and nutrients. During the last 12 weeks of a pregnancy, the eye develops rapidly. When a baby is born full-term, the retinal blood vessel growth is mostly complete (The retina usually finishes growing a few weeks to a month after birth). But if a baby is born prematurely, before these blood vessels have reached the edges of the retina, normal vessel growth may stop. The edges of the retina—the periphery—may not get enough oxygen and nutrients.

Scientists believe that the periphery of the retina then sends out signals to other areas of the retina for nourishment. As a result, new abnormal vessels begin to grow. These new blood vessels are fragile and weak and can bleed, leading to retinal scarring. When these scars shrink, they pull on the retina, causing it to detach from the back of the eye.

When we found Ty's ROP he was progressing so fast they called it rush disease. It was in the stage 3 of ROP.

Stage III — Severely abnormal blood vessel growth. The abnormal blood vessels grow toward the center of the eye instead of following their normal growth pattern along the surface of the retina. Some infants who develop stage III improve with no treatment and eventually develop normal vision. However, when infants have a certain degree of Stage III and "plus disease" develops, treatment is considered. "Plus disease" means that the blood vessels of the retina have become enlarged and twisted, indicating a worsening of the disease. Treatment at this point has a good chance of preventing retinal detachment.

Rop can cause other things issues in children. Infants with ROP are considered to be at higher risk for developing certain eye problems later in life, such as retinal detachment, myopia (nearsightedness), strabismus (crossed eyes), amblyopia (lazy eye), and glaucoma. In many cases, these eye problems can be treated or controlled. One of the things that Tyler suffers from is Nystagmus or fast movement of the eye. He also has a a Coloboma in his eye that is a man made one but it makes some of their own issues.

So what does all the medical jargon mean in our everyday life,

• Ty wears glasses
• Ty has very bad eyes. His prescription is -9. Legally blind is -13
• Ty has to work so much harder to see and use his eyes. Not only is it an eye thing but a brain thing. It takes him a lot of effort.
  
• He watches TV up close. We don't know if it is because he can't see or just habit.
  
• He likes touch and feel books
• He has sensory things to some things he doesn't understand because of his vision. He doesn't like loud noises on toys. ( we throw away/and don't buy toys that make noise or move.) Those things make him upset because he can't always see why they are doing things or where they are coming from.
  
• He like light sticks and light boards from the foundation for blind children.
• We don't know how far he can see but we know it isn't "normal" but we teach him that he is normal.
• His eyes are not straight. He looks like he has a lazy eye but they say it is because some parts of it is missing vision.
  
• He has limited peripheral vision.
  
• He may be a candidate to learn braille but he will need to either have a computer or a program that enlarges his print.
  
• He ( as of now) will not be driving a car. ( he he its cause he is 3!) But if he is legally blind he will not be driving .
  

Some things that sometimes get me with his vision is like when he is in the bus and he can't see me. I want him to see me and wave goodbye, not because they tell him to wave but because he can see. Or for him to look up and see a rainbow but he can't see it. Today a airplane flew overhead. IT was very loud. He can't see it and he got scared. I want him to see them.

His vision are the least of the things I think about in a day with him. I know he can see and one of the gifts I was given was that he would be able to see. No matter what he can see that his mom and dad love him. His sweet little face and big blue eyes are what is the most important to me.

In honor of this awareness month please remember the little ones that can't see. Donate a book in their honor with touch and feel characters. Help them use their eye sight. Also contact the local foundation for blind children in your area. They are a wonderful resource.