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.