Your New Favorite Read: Blind Ambitition

Hi everyone! My name is Frankie Ann and I am a legally blind, twenty-something who is just trying to live her best blind life! And this is Blind Ambition- a weekly blog column where I will be sharing Accessibility Tips, Expanded Core Curriculum Hacks, Skills for Advocacy, Personal successes, struggles, and so much more!

Here’s a little bit about me! I was born with septo-optic dysplasia which is a really fancy way to say that my optic nerves are underdeveloped. I have poor distance vision (20/400 in my left eye and 20/800 in my right) no peripheral vision (tunnel vision), no depth perception, severe light sensitivity, degrees of night blindness, slight nystagmus, and a partial astigmatism. Mix that all together and you get me: a large print reader (24 print Arial bold font for the win) and partial cane user (at night and in excessively crowded or unfamiliar environments) who has spent her life trying her best to adapt to every situation that comes her way and never back down from a challenge!

I met Robbin back in 2010. At the time, i was going through a serious hard time coping with my vision impairment. I was just about to turn sixteen and while all of my other friends were getting hyped up to get their driver’s licenses, I got my very first white cane and was taking street crossing classes with my Orientation and Mobility instructor.  I felt totally lost, insecure, and frankly embarrassed by my vision impairment. But Robbin helped me to see past all that- both literally and figuratively! She taught me that it’s not about what I could see, but about what I could do. Once that seed was planted, everything changed!

Though my final high school and college years had their fair share of challenges and hard times, i was equipped with a new found confidence and pride in my self that helped me to rise above and keep pushing through. That confidence helped me to make the decision to leave my home in Connecticut and move to the biggest, busiest, and most visually overstimulating city in the country- New York City! My hope is that by sharing my experiences here, I may be able to help other blind/visually impaired individuals work through their own struggles, find solutions to their challenges, learn that they are DEFINITELY not alone, and chase their dreams!

I am so excited to be launching Blind Ambition! Each week will cover an aspect of living life with a vision impairment. Stay tuned next week for our first topic: “Vision Statements: How Do You Explain Your Vision Impairment to Someone who is Sighted or Just Doesn’t Get It?” In the meantime, follow my Instagram @blindambitionblog for daily posts about Accessibility, Advocacy, and more!

Thanks for reading! I can’t wait to keep sharing with you!

Stay Ambitious,

Frankie Ann

Keeping Up with Jimmy...In High School

My thoughts: I CANNOT believe that this is a post about Jimmy eh um...Jim going to high school! I still remember him as my preschool student. Where has the time gone? I've loved staying with him and his mom, Kristi as they take on new adventures together. I can't wait to see what lies ahead for the both of them.

Hello everyone! It has been a while since we have chatted. It is September 2018 and we all know what that means, the beginning of the school year for most. We have left behind Elementary School and Middle School/Junior High and now it is time for Jimmy to start his last school at home, ie. High school!!! With every transitional school year it doesn’t come without its challenges. This year we have had more than I have seen before with Jimmy. To start the first week of school were all half days due to extreme heat which also means he was not given a chance to get his bearings around school nor get used to his schedule, nor his teachers/administration had a chance to get to know him, so for all us parents of our blind students who are transitioning it means EVEN MORE HEADACHES.

As I sit here I don’t even know where to begin: classes, teachers, over protective administration who are comparing Jimmy to past students or the fact that Jimmy is in HIGH School. Let’s start with the fact Jimmy is 100% a teenage AND a high school student. And no matter what is said or asked of, or even reminding him to get his school work done we get an attitude for it. For the past 9 years I have been dreading this school year for no reason other than knowing that once THESE four years are over my only son is off to college and it is the beginning of his adult life. I truly am not going to dwell on the college years as I do have 4 more years to get through as most of us remember our high school experiences so we will have a lot more going on socially than ever before. Jimmy plans on wrestling for the school this coming winter which will be something new for him but hey he loves a good challenge.

A picture of Jimmy as a preschooler

As we are only a week or so into school it has bee a ball of fun (insert sarcasm here) as Jimmy was NOT given a brailled schedule the first day of school nor have any teachers (that I am aware of) given him any brailled work, which means they haven’t given any to his braillist. He has already been given zeros on assignments because those assignments were uploaded to Google Classroom which he currently doesn’t have access to. (yes an email was sent out to address this after it was brought to my attention) One amazing thing though is that Jimmy has finally truly embraced his laptop and wants to do most of his work through this technology but with that being said we are already seeing difficulty accessing email, getting work sent to him, and then him back to the teachers but as with all transitions this will get worked out sooner than later. Due to all of the half days (we had a heat wave the first week and a half of school) the staffing meeting we had, had to be rescheduled, at which time we planned to go over all areas of concern the teachers MAY have as we are tackling a new school. The meeting was scheduled for more than a week later so thus we couldn’t get some of the challenges out of the way. This means the teachers had no idea how to get him his work or how he is going to his work back to them. This really puts a damper on not having any hurdles to get over because all we have at this point are hurdles.

As I haven’t had a chance to meet the teachers face to face only ONE teacher has reached out to me since the beginning of school to introduce themselves to me and give me a quick rundown on what is expected, if I have any concerns and that this teacher is excited to have jimmy in their classroom, the two even spent about an hour after school one day just talking getting to know one another. (Bonus points to this teacher). 

Jimmy was lucky enough to have a couple trips to school over the course of the summer to tour, walk, get to know his environment the best he could with no other students but even with this additional time he still found a way to walk into a display case. You may be asking if he was using appropriate cane skills to which the answer is yes, but the problem is/was that this particular display case is hanging on the wall with nothing below to allow his cane to indicate to him that there is something sticking a foot and half out from the wall until he found it with his face. He is fine and he went on about his day but the problem we faced was a friend saw it and reported it to the Principal. I know this was done out of concern for Jimmy to not get hurt but it caused the school to go on hyper drive over liability and claim that Jimmy needs to be observed. As I came to find out that there were a couple more safety concerns because I am allowing Jimmy to walk through the parking lot and walk home. At the school we have a couple of over protective staff members who claim that Jimmy was in danger of getting hit by a car (which was not the case AT ALL) but now Jimmy has to be shadowed for the next 2 weeks to make sure that he is safe. If Jimmy was not safe all the appropriate people, in particular his O&M teacher, would not have signed off on him walking.

Ok so let me back up a little bit, Jimmy’s TVI and I have been in lots of contact through this process and she did give me the heads up that the school was thinking about having Jimmy shadowed for a little while to just make sure he has his classes down and everything is good. His TVI told the administration to please contact Mom to discuss it with her prior to starting any shadowing of Jimmy. I bet you all can guess what didn’t happen, that’s right I did not get a call and again found out after the fact of this happening. Can anyone take a guess as to what happened next? That is right I marched right down to the school to have a face to face with Jimmy’s administrator. I am not going to allow my son’s independence be taken away that quickly with only 4 cumulative days at school.

As this is a new school the administration did not know me yet, but they do now!!! I have to say that the discussion I had with Jimmy’s administrator did go well, we both had a chance to speak about the who’s, when’s, why’s and now they are aware that if things happen behind my back and I find out about it, I am not going to just make a phone call they are going to see my face and we are going to talk right then and there. The one funny part to the conversation (at least to me) was when said administrator said that they want to be able to put my fear to rest which I then interrupted them and explained that this was not fear I had but straight anger for what was happening without my involvement. It was at this point I had to start educating them. When asked if I heard about him hitting his nose I said yes because my child talks to me about that. And the next question/statement was well he was asked to go to the nurse and he turned it down. I said yes I know, he turned it down because he was fine. I then pointedly asked the administrator if it was a sighted student who wasn’t paying attention and hit this thing and said they were fine, would everyone be up in arms? Their reply, no probably not, so for my child because he is blind we are not going to listen to his words of him being fine? Administrator saw my point and said you right we have to listen to what he is saying and not think he doesn’t know himself well enough to state weather he is ok or not. Furthermore they are already comparing him to another. 

A picture of Jimmy on his first day of high school with a female friend.

You see another blind student just graduated at the end of last year, so the school has had a blind student so recently that one would have assumed they would give this NEW blind student a chance to get acclimated to the school. And from what Jimmy was telling me they (the staff) are already comparing my child to this child. I feel as a parent of a blind child it is part of my job to educate the sighted world as to the fact that no two blind children are the same just like no other two people (no matter the circumstances) are alike. It has been my experience that as soon as the word blind, or deaf, or disabled are used people have a preconceived notion that two individuals with the same dis-abil(able)-ity (see what I did there, the word able is in the word disability and they have to recognize that are children are still able to do things) are the exact same, but in actuality that does not mean that those two children have the same skills, personalities, or even the same acceptance to where the cards they have been dealt. My child and this other child are complete polar opposites that any two kids can be. And it is really frustrating to have to explain, yet again, that the staff has to look past the blindness of these two students and look at the student. When all of this was discussed with the administrator they said well I already see the differences between the two and Jimmy’s teachers will as well. I was like that is all good and fine but what about the rest of the staff who does NOT have interaction with my child but instead just assumes he is like the other boy. Everyone has to be told to have an open mind in regards to the different children.

As Jimmy is now in high school he has to continue to speak up for himself which he does very well. This time he asked me to start the conversation as he sincerely didn’t know who to go talk to. The administrator I spoke with did pull Jimmy aside the following day to have a conversation about all the goings on and they were able to have an open and honest conversation about it all. Jimmy got to convey his perspective on how things are going and to speak towards the “incidences” and the administrator also took what Jimmy had to say to heart. Jimmy is and will be fully involved in his education and things he like and doesn’t like. If he feels there is something that can be changed and will be hands on.

I know it can at times seem that the schools, administrators, or even the teachers don’t get our kids but that is why I will always be outspoken with them and try to get them to be open and understanding that our kids are just that kids who have the right to be independent and left alone to enjoy school like all the sighted kids. Are they “different” I guess you can say that but that doesn’t mean that they are less-than anyone else if nothing else they are more-than because they have had to face a harder life and continuously have to Prove themselves to everyone around them that they ARE just like everyone else. They are students who are just trying to navigate growing up like everyone else and if that means I have to be momma bear at times to get people who don’t know my child well to understand to back off and let him be, than by George that is exactly what I am going to do.

It is hard to be a parent of a blind student, especially when you enter a new school and have teach them all what said child is capable of. This does not happen with sighted students only with students who have an IEP, 504, whatever the case. We (or at least I) want to just scream in their face to back the #&( up and let my kid be. He can handle himself and if he can’t he will be the first one to ask for help or guidance. I want to scream to give him more than 3 days to get used to his school and show you who and what he is. I want to scream he is a typical 9th grader who doesn’t want to be treated any different than any other child in the school. Please give him room to grow and be comfortable in his own skin, do have a preconceived idea of who or what he is. Take a minute and talk to him (this part goes for the other students too who just see someone different and assume they know what he is like) isn’t that why you went into teaching to help and teach our children to be the best version of themselves and give them a chance to become productive humans in this world we live in? STOP ASSUMING and take a minute to learn.

Come Tuesday we will be starting our second week at our new school where we have both Open House and the Staffing meeting. My hopes are I meet everyone at the Open House and then the staffing meeting will be a breeze and I will not be fighting will all the teachers on who’s, what’s, where’s, and how’s. Hopefully they will be open and willing to do things just a little different to make sure that Jim is included in all areas of the classroom because if not we will be seeing each other real soon and after that meeting Jimmy will be included through modifications that I will do my best to give them if not I have a wonderful support group (TVI’s, past ECC instructors, and other families) to go to help give me ideas on how to best help the class and Jimmy. So for now so long and keep your fingers crossed that everything will be worked out within the next week and I will never have to think about it again. (I know it’s kind of a pipe dream, but a mom can hope for this Right!?)

Study Abroad ECC Australia

I am so excited to share this post with everyone because this is all about Study Abroad ECC Australia! This has easily been added to my top 5 education experiences. I almost don't even know where to start. Just kidding! I will start at the beginning. The beginning is gratitude to my school, the Utah Schools for the Deaf and the Blind, for supporting this idea! Two years ago I led us on an exchange program with Camp Abilities Ireland and that kicked off our study abroad program. I learned that Australia also has a recognized Expanded Core Curriculum and started researching schools. And now we had a study abroad location: Australia! 

We partnered with RIDBC Sydney and SA School for the Blind (SASVI) in Adelaide. 

It was critical to us that our program was a true education endeavor from start to finish. Students had to apply for the program based on a college application. After a review committee used a rubric, scored the essays and selected the students, we were in business!

We spent the next 2.5 months together in an Expanded Core Curriculum bootcamp! The entire study abroad program was based on the ECC--my dream scenario :) Each week students completed projects from transportation to recreation and leisure. We used distance education, technology and on campus sessions for our work. One of my favorite instruction tools was using some of my former students as mentors. These former students are all domestic and international travelers. We had Zoom sessions (like Skype) and students asked questions and listened intently to advice from mentors. 

 Here are some of our examples of lessons that we did in preparation for traveling to Australia:

• On campus session. Students had to work with their mobility instructors and themselves to coordinate traveling to campus as a group. No parents could provide transportation to campus.
• Financial Academy. They also had to be enrolled in our distance education financial academy. Coursework went beyond budgeting but also covered accessibility for banks, where they want to live and the real world budgeting. 
• Fundraising and coordinating. Students organized a variety show to help support their financial needs. They were in charge of coordinating, entertainment and ticket sales. 
• Transition. We spent a lot of time focusing on skills (for right now) that would be needed later in adulthood. We used the Transition Skills Competency Checklist.
• Weekly ECC in the real world projects. The main goal of the program was to help students see how the ECC is every where in their daily life. They learned all the skills that comprise the ECC. It was more in depth than just saying "independent living skills". They could list skill after skill that were included in the ILS section. 
• Communication & presentation. They developed their public speaking skills for sure! The students were responsible for all presentations. They gave ECC presentations at schools, with Aussie students and teachers. They will forever remember all the areas of the ECC!

There are few experiences these days that teachers can really feel like they are doing it right. This was my experience. We often write IEP goals, do lessons, camps, etc. but it's tough to see it all through. For the entire program I was able to "see it all through". It was fantastic to teach, coach, model and then watch them not only implement it but to get it in the marrow of their bones. These super six students learned to see how the ECC is part of everything they do and how it is the most important part of their education.

 What else besides the Expanded Core Curriculum did we do? The ECC was the most important objective of our instruction. However, in order to show how important it is, it needs to be taught through meaningful experiences.

Here are some of our adventures:

• Touch tour of the Sydney Opera House. We had a special tour with a lots of hands on! The tour guide even brought out a small replica of the opera house. We got to get hands on and go back stage and see the sets, one of my students had the opportunity to sing and we got to learn so much about the famous opera house. 
• Sydney Harbor Bridge Climb. This was an unforgettable experience! We suited up and climbed the iconic Sydney Harbor Bridge. Many of our students had very limited vision but we were still able to do so much on the bridge climb. We divided into small groups and got hands on and ears on with the climb. 
• Sports, recreation & leisure. We had a variety of different recreation activities that were a blast! Most notably, we learned how to play a variety of sports that were accessible for people with vision impairments. We loved learning how to play blind cricket and Australian Rules Football. 
• Australian Rules Football match. This one needed its own line because this was another unforgettable experience! We got to get on the field and high five the players as they came out. We had never seen this before so we loved learning the game. Thanks to our friends at SASVI who taught us how to play. 
• Our koala cuddle. We loved visiting the Australian wildlife parks and learning about all the different native Australian animals but our favorite was the opportunity to hold a koala!

The students had lessons on everything in the ECC (are you sick of me saying that?) especially in transportation situations that they don't always encounter. We did the traditional bus lessons but we also did lessons for taking a ferry, taxi/Uber, train and finding our way all over Sydney! That was no small feat as there is a ton of construction in Sydney.

The best part is that this isn't our only program. We are so excited to continue our Study Abroad programs! It truly has become one of my most treasured teaching experiences.

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White Cane Day 2015

Happy White Cane Day 2015!!!

I have been so excited to see all the fun posts on social media sites about White Cane Day!!

Are you curious to know how I celebrated? We had to do our celebrations a little early due to fall break in Utah. We had a big event last Friday night that was SO much fun!

We were honored to have Blessing Offor (most notably from TV's "The Voice" but is also a very accomplished musician and speaker). Check out his The Voice audition below. 

Blessing was a true blessing as he was motivational, real and energetic about his life and experiences as someone with a vision impairment. Our theme for White Cane Day this year was "Sing Your Song of Independence". I chose that theme because independence isn't the same for everyone. There are truly different levels of it. It's time we have fun and celebrate it! Plus, I totally wanted to empower my students to pick up their white canes and walk with pride. 

I decided to turn White Cane Day into a full on short term program for students. We spent almost two full days with Blessing. We co-wrote a song with him and several talented students shared their musical gifts. I also wanted this to be a big opportunity for community service, education and awareness. Our students got busy by making handout cards with information about White Cane Day and their feelings about the white cane. We made white cane key chains to give away. 

I couldn't have done it without my amazing staff that always steps up and helps with these events! They are a talented group of recreational therapists, OTs, special ed majors and adaptive PE teachers from our surrounding universities. 

The t-shirts were one of my highlights! But if you have been reading my blog for awhile now, you know that I love my t-shirts and designing them is always a fave thing for me to do. 

Did you forget about White Cane Day? It's not too late to celebrate! There are so many ideas that you can do to help promote awareness of White Cane Safety Day. You can have a class presentation (and let your child talk about the white cane), invite mobility instructors to come and demonstrate (and then let you try under blindfold). I have done art contests in the past where students draw white cane safety. There's no "right way" to celebrate as long as you are! 

Can't wait til next year to celebrate one of my favorite holidays again!!

Keepinig Up With Jimmy...As He Goes Back to School

 My note: I am in complete denial here. Complete. Denial. There is no way Jimmy can be entering 6th grade. It seems like just yesterday I met Jimmy and Kristi for the first time at a library for an activity day for our preschool division. Yes, preschool. Then I would invite them to our holiday skills day and we would make cookies together. I would have to get a chair for Jimmy to stand on so he could reach the counter. Then we started summer camps a couple years later for our kids (in Connecticut). Jimmy was never old enough but I knew that if he came, he would thrive at them. I decided to create a special "junior" camp as a day camp option for our younger students. It was all because of Jimmy. I knew that there was this awesome kid just waiting to be old enough to come to our residential programs. And now, he is in SIXTH GRADE! Kristi hasn't been the only one keeping up with Jimmy. He's had some amazing TVIs that have had the awesome adventure of working with him. I am lucky to count myself as one of those to keep up with Jimmy. Pretty soon he will be working at one of my programs as an intern. Exciting, but scary and crazy that so much time can go by and truly feel like it was "just yesterday...". 

Jimmy on the first day of school

Well Hello there again!!! I cannot believe the smmer is OVER!!! Just to let everyone know Jimmy did NOT have a slow summer, he busted through it like only Jimmy knows how. The short list would include: swimming, waterskiing, a trip to Maryland, going to sleep-away camp in New Hampshire, spending 2 weeks in Wisconsin with family (which also included: tubing, water skiing, jet skiing, shooting guns, driving tractors, 4-wheeling, and one of the best weddings we have attended), and next weekend (Sept 5th) I will be taking Jimmy to his first concert and then we are to get up the next morning and go visit my best friend in Maryland. 

With summer being over it only means one thing our kids are getting ready to go back to school, that is if they haven’t already begun. Where Jimmy and I live they don’t start until Sept 3rd so we have a little less than a week before that dreaded day. Are your kids returning to the same school or are they transitioning to a new school? Jimmy is in his last year in the elementary school (Middle School next year, please say this isn’t true) which helps keep MY anxiety down. But at the beginning of every year there is some anxiety for our kids of who is in my class, am I going to like my teacher, what changes have they made this year and am I going to have the same TVI as last year? For the last question the answer is some years yes and some years no. For us this year the answer is no, and this is ok. I think that Jimmy has to completely learn to deal with change and that it is an inevitable part of life. For our kids it seems like it is a little harder to deal with these changes as they can’t physically see the changes, they have to have complete faith in those around them to help them through it. 

Jimmy had his own requests for hair--punk rocker, bluish/green hair-spiked, nothing but band t-shirts.

Preparing for school each year is easier for me than most parents. They all receive their back to school list and for me there is no list, not gonna lie I LOVE this part of back to school. All we ever really have to get are new backpacks/lunch packs. And maybe a pencil and pen for those once in a while circle questions…you know what I am talking about! All my parent friends are jealous of me for this one aspect, and I will take it. And to modify this for Jimmy we go to a store and he will feel the backpacks and the one that he likes I will describe it to him and then he decides if he wants it or not. Same goes for lunch packs. This year as I said we are lucky because Jimmy is in the same school he has been in for the last 6 years (our elementary school goes K-6) so there is no anxiety for him in that aspect but I can only imagine if your child is starting a “new” school. I honestly don’t even want to think about it until next year because I think I will have more anxiety than Jimmy and worried that the “new” kids entering his school are going to be awful. But that is not this year and we can talk about mommy angst this time next year. For now I am going to just say Yay to kids going back to school (boo cold weather on the way) and I hope everyone’s children have a wonderful School year and kick butt in all their areas of study. Until next time…laters!!!!!!

Video documentary: His wife goes blind. He steps in to support her.

Hi friends,
A friend shared this video on Facebook and the moment I read the caption, "As His Wife is Going Blind, This Husband  Does The Sweetest Thing and She Doesn't Even Know It", I knew I would be interested.  Check out the video:

I loved the raw emotion of this! Of course being in my position on the other side, I was thinking "he can't do this forever...". I couldn't put my finger on the other feelings that I was feeling. I knew this was true life for someone who has blindness onset later in life. I couldn't help but to keep thinking, "blindness isn't the end of the world!!" but I also knew that that crusade wasn't the right way to describe what I was feeling or what was being conveyed. I decided to share it on my Facebook page and invite my friends (several of them are my colleagues) to weigh in with their thoughts. Holy Hannah, they hit the nail on the head!

Each comment really gave me some insight. I love how Karen pointed out the love and respect doesn't have to take away her independence. Jessica (an orientation and mobility instructor for children) provided a really good point (that Patti, an awesome TVI highlighted): he will build his own confidence in her abilities and then can step back. (ALL my parents please write that down: Build your own confidence in your child's abilities and then step back.). Lastly, Cody (my former student and future TVI) reiterated the balance that we, as professionals, need to maintain as we handle such tender feelings. It might be our students who are struggling with their loss of vision or it could be parents, siblings, friends, etc. that are still finding their way.

Loved this video! Thank you Jubilee Project for doing such a great job!!

A Must-See Music Video!

Hi friends,
Sorry for the big gap in posts--it's summer time and for those of you that have been following me for awhile know that I'm away at summer programs. This summer was my busiest summer! I did 4 (almost consecutive) residential summer programs for students all over Utah. It was a blast!

This morning while I was warming up for my workout I was watching VH-1 and I saw this video by the group X Ambassadors. It caught my attention because it opens featuring a blind woman who power lifts. At first I thought it was a USABA commercial. But I recognized the song so I kept watching. Check out the video:

I love the clips they used, the athletes that they featured and the whole vibe of the video with this awesome song playing in the background. 

I love the message in the video!! Let's share messages like this. Let's support the empowerment and keep sharing the video (and keep listening to the song--it's awesome!).

At First Sight

    

You have to watch this awesome video of a blind mom and her ultrasound of her baby! It was so special to watch. It got me thinking this Mother's Day weekend of my own mom. I think of her often of course but sometimes I get too clinical because I ponder things from a blind perspective or from a third party, an outsider if you will, insights. But after I watched this video, I simply just thought of her.

For those of you who are new to my blog, my mom is totally blind and has been since before I was born. She has never seen me. I never thought of her as my "blind mom". Blindness was quite noticeable in my life--we didn't have car (she was a single mom), I read a lot of stuff to her, it was hard for her to help me with homework or do my hair. It wasn't that blindness was a bad thing or something that held me back. It was simply just there. A way of life for both of us. She knew she was blind and I knew how to make countermoves to accommodate for it.

I have been in the field of blindness as a professional for over 10 years now. I love it. It is a way of life, a passion, dare I even say a special talent to understand blindness. I learned a tremendous amount from my mom although I didn't truly understand this until much later in my life. As I have said, blindness was just a way of life--nothing out of the ordinary or special to me. I give a lot of presentations on the Expanded Core Curriculum and work with a lot of parents. I like to share stories of my childhood. The stories are true and they are funny. Most of my life was spent just my mom and I and we had to figure things out unlike a lot of mother/daughter teams. We were poor and resources were slim to none. That's where I learned self-determination (an area of the Expanded Core Curriculum). I realized, not too long ago, that I learned my self-determination from my mom. My self-determination is easily my biggest strength. I am motivated, strong, determined, passionate and even a little too demanding. I could have easily gone another direction in my life. I could've skipped school, got into trouble and turned to a lot of unsavory coping skills but I didn't. My mom went down a lot of different roads in life but the one thing she stood strong on was that she could do things. She was wrong a lot--sure, but she was hell bent determined on what she wanted to do.

Then I saw this Huggies video about a blind mom and her first ultra sound. The mom wondered what her baby would look like and his features. It is a beautiful video. I wondered about my mom and her thoughts of me for the first time in my life. My birth story is unlike traditional stories. My mom didn't know she was pregnant until she went into labor. The whole thing was a surprise (although if you knew me, you would know that I can make an entrance...). My mother also has epilepsy as well as my father. This was quite dramatic thing to happen to two of them. She thought she was having stomach cramps and headed for the toilet. I don't think I need to go on further as you can imagine what she thought was actually happening. It wasn't until the paramedics arrived that she learned that I was looking to make my entrance.

And now I think of her sitting on a hospital bed alone with her newborn baby. It takes me a minute to connect to this as this if often 'just a story' about my birth that is retold to me. What an emotional mess my mom had to be?! She couldn't have dreamt a story like this if she wanted to. And yet there she was, sitting on a hospital bed with a baby girl, her baby girl in her arms. I wonder what it must have looked like for her to touch my face, my head, nose and ears. I was a full size baby of 6lbs. I was strong enough for her to hold without machines or tubes. Did she count my toes and fingers? I wonder if she pleaded with God to give her back her sight so she could see me or did she already know me by her touch? Blindness was all around her. Her physical blindness was obviously there but what about all the other blindness that would quickly approach her? The blindness of those around her that would tell her that she would't be able to do this as a blind mom. The blindness from her own lack of self confidence to raise a child that she couldn't see. The blindness of not being prepared to do this--no crib ready, no car seat, no list of potential names to give.

Well, it's definitely been an adventure over the last 35 years of my life! A lot of people could easily look at me and think I am the miracle. They even called me a 'miracle baby' when I was in the hospital. The definition of the word 'miracle' includes that it is a: "surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency." or "a highly improbable or extraordinary event, development, or accomplishment that brings very welcome consequences." Motherhood for my mother the past 35 years has been a miracle. She has done an amazing job. She hasn't done it all alone. No mother has. My mother was humble enough to let others step in when she could not do it. She might not have been the one to teach me a lot of things but she was always the first one who was the proudest. I've always known that. She's doing the best that she can. Just like I am sure she swore she would do the first time they put me in her arms.

Keeping Up With Jimmy: Inspired

Robbin: This has to be my favorite post (so far) from Kristi. Read on and you will know why.

Hello Hello all!!! It has been some time since I have seen you all! We are finally thawing out from the cold snowy winter here in Connecticut and I cannot tell you how happy I am. This blog is going to be a little different than the usual keeping up with Jimmy; I would like to share some news with you, nothing bad so don’t worry. Just a little journey I went on. About a month or so ago I was filling out some so paper work for Jimmy to be able to go to a couple camps with Perkins Outreach program up in Watertown, MA. On the back of one of the programs was a quote… “Just because you can’t see the stars, doesn’t mean you can’t reach for them.” (At the time I had no idea that Helen Keller spoke these beautiful words and actually didn’t learn she did until after I got the tattoo) I read it and all I could think about was how accurate it was for our household. Everyday Jimmy proves to me that he reaches for those stars and makes me so proud and honored and grateful that I get to call him my son! These words to me personifies just what Jimmy does each and every day. He does not let his blindness get him down. He just goes out there and tries anything asked and not asked of him (he is my daredevil after all). These words that were spoken by Ms. Keller is what I hope everyone, blind or not blind, can hear and take to heart. To overcome any odds in their way and prove to everyone that you can accomplish anything you put your heart and mind to. So obviously I was so obsessed with this quote that I was telling it to anyone who would listen to me. (Actually I was even telling people who didn’t want to listen to me too) anyways I decided that I was going to do something that I had not done for 10+ years and that was get a new tattoo, and that tattoo was going to be this quote.

The plan was to get it done it some fancy print on my forearm. Then one night as I was sitting in my room thinking about it, I had what I like to call a 'brain fart', I decided that not only was I going to get these words tattooed on me but the font I would chose would be BRAILLE!!!! I got so excited that I wanted to do it all myself that I started looking up websites to find contracted braille so it would be spelt out correctly and everything. I finally found one got my contractions and went into Jimmy’s room and Brailled it out myself. Of course I had Jimmy check it to make sure I did it right, and I really thought I nailed it this time…nope, not this time. I give Jimmy my paper and he turns to me and goes “you did really good mom but you missed the “ea” contraction. (Darn that “ea” contraction) but that was the only one I missed so I was actually really excited! When Jimmy asked me why I did that I told him, “well bud I did it for you” he was very confused by this statement. I went on to explain to him that I was going to tattoo the quote in braille on my arm. At first he was a little like ooookkkk, not really believing me. But afterward I went and had it done, he told me that he thought my new tattoo was “Crazy Awesome”. I know people are going to ask me “why did you have them do it in braille? No one is going to understand it. To which I will reply, those who have been affected with blindness will get it, and I did it in braille to pay homage to all the people in the world who are blind including my son. To let the world see that I have been touched by blindness and am not ashamed of it. Instead it is a part of my life, and I want to honor it. This may not have been the life I would have chosen for myself or my son, but it is the one we have so I am going to enjoy the ride and be proud to say yes I know “some” braille (I am telling you it is the hardest thing to learn by sight) and I am proud to know it! Yes our kids are “different” but that doesn’t mean they are going to have any less of a life than anyone else on this planet!  I hope you all like it!! See you again soon!

Keeping Up With Jimmy...On Valentine's Day

Hello Again Everyone…so it seems as Valentine’s Day is upon us once again!!! And this by far my least favorite holiday when it comes to helping my son with school Valentines. See I am not a “crafty” person AT ALL….like not even a little bit. When I was born the creative gene was left out. I always have such a hard time with Valentines and making them “Braille” friendly. Every year Jimmy and I always talk about what we are going to do and he beggggsssss me to just get normal Valentines for the kids in his class. Which we have done. The first year I did try to braille them, let me tell you this DID NOT work out well at all. The Valentines are too small to get the names on the Valentines. For a couple years we did make our own, just simply used Braille Paper and the same saying on each one for everyone in his class. Well can I tell you that this is time consuming--- I MEAN time consuming.

I found these at http://junelily.com/free-printable-valentines-cards/

So then the last couple year I have been the most horrible, non-independent, enabling mother there is. I will admit it, I just write out the Valentines for him. We go pick them out then I sit at the table and together we decide who will get which one. I can hear the gasps now (lol) but let me explain. I, as most of you know, try my very best to make Jimmy do EVERYTHING himself independently. But sometimes he just wants to be a normal kid in school and give out typical Valentines like all the other kids. (And yes we have even tried using his NoteTaker but again it doesn’t become very Valentiney and it is once again, a time consuming task) I know my child will never be “normal” so when he has an opportunity to do or use something that all the other kids do, I regress and allow myself to enable him in not being independent. I have learned to choose my battles with him and am fully aware that this does NOT help his independence but at the same time this is just something that happens during 6 (7 if you include Kindergarten) years out of his life and not something that he will be doing every year of his life. When he finds the “one” or even the “at this time” girls in his life he will have to write his cards in a different way or figure something out. 

Again,  I know I am almost doing him a dis-service for writing out all the names for him but if it makes him happy to be able to give out store bought Valentines this one time a year, then so be it and that is what I have chosen to do. Within the family we go to the store and I read him cards for certain members of the family and when we get home we work on our signature, which is a chore as some of you know and others you will see…hehe As always I don’t know if I am doing any of this correctly but I am doing it the best I can and so far I have a happy well-adjusted 10yr old boy.

Robbin's editorial: Kristi does a fantastic job of writing her blog posts so I usually just cut and paste them into the post. I'd like to share my insight to her thought this time around. I love having Kristi share her thoughts on topics because she is living this crazy adventure with Jimmy and she isn't shy to share how it really is. I applaud her for making the Braille attempt every Valentine's Day. I have a great mental image of her and Jimmy making these Braille invites together and her rolling her eyes as she laughs to herself about how "uncreative" she is. I wanted to take a moment and share my thoughts on "independence". It's a tricky word because it usually implies an "all or nothing" situation. Let me say that Kristi is doing everything right when she and Jimmy buy their store bought valentines together. The reality of our sighted world is that Braille isn't part of everything. It is a sighted world and passing out WWE or puppy hearts valentines is part of the experience. The experience of going to the store, selecting the valentines, closing them up with the little heart stickers and passing them out at school. That is the school Valentine's Day experience and you bet your last dollar that Jimmy understands this. He and Kristi probably have a good laugh at picking them out together. Jimmy has his own opinion on things so I am certain that they go through a number of choices before he selects the perfect paper valentines to pass out at school. He's also learning how be at the store, rely on communication with others to make choices and purchases. You can review the price of valentines and discuss why some are $2.48 (the kind my children have to choose from) and why other boxes of valentines are $4.00 per box (the kind my children cannot choose from. It adds up when you have over 75 valentines to purchase, ha ha). Kristi is right. Six or seven years of cute Spongebob valentines is all you get. Think of all the other experiences you can help our kids out with at the school Valentine's Day party--how do you put valentines in to paper bag mailboxes? how do you open up a valentine or close one with the little heart stickers? That all being said, if you are a mom that has super creative talent and has figured out how to successfully get Braille on the paper valentine cards, please share your ideas!! There are several moms out there (maybe even Kristi too!) that would love to hear some tricks of the trade from  you. The beautiful thing about this world is that we are all different. And you know what, 'different' is not a dirty word!!

Keeping Up With Jimmy

Hi friends, I am happy to start a several post series about being a mother of a child who it totally blind. You already have already met the mom. Thanks to Kristi and her amazing son Jimmy* for again guest blogging for me. I have recently done some parent conferences and I feel that hearing "the word" right from a parent's mouth is more effective than hearing it from mine. I have empathy but Kristi has the true experience. A lot of times we hear from parents that have a child with multiple impairments. There is a great community out there for parents who have kids that are MIVI and I have personally learned a lot from them. But what about these typical kids who are in the general education class? Kristi is here for a bit on The Bee to help shed some perspective on her crazy adventure of keeping up with her son Jimmy.

Hello Blogging World, my name is Kristi and I am a parent of a VERY active almost 10 yr old blind child. Jimmy was born sighted but at 2yrs 2months Jimmy was diagnosed with bi-lateral Retinoblastoma. A childhood cancer of the Retina. At the time his left eye was just about 100% tumor and his right eye had 3 tumors in it the biggest being in the 6 o’clock position. At this point the doctors told me that he was blind in the left eye because he also had a detached retina. Through the course of a few years Jimmy had gone through external beam radiation, cryo and laser treatments, and a brand new procedure called Inter-Arterial Chemotherapy (since then the name has been changed to ophthalmic artery chemosurgery) basically the doctors took the smallest catheter they could find, feed it from Jimmy’s groin all the way to the eye artery and fed chemo directly into the eye artery; retina re-attachment surgery, and cataract removal. During all of this Jimmy would have check-ups with his doctors starting at every 3 weeks and we are now at the point that he only sees his doctors 2 times a year with an annual MRI. During the duration of these procedures Jimmy lost more and more vision and is currently left with only slight light perception. I know a lot people cringe at everything Jimmy has been through but as we have lived through it I can understand. Personally I never cringed, the moment the doctors told me the cancer had not left the eye orbit (eyeball) I knew deep down in my gut that my son was going to be fine and we would work through any of the side effects he might endure. When the day finally came that I was told he wouldn’t regain his vision unless there was a miraculous breakthrough in full eye transplants I knew what needed to happen. I chose, to some, the road less traveled and made the decision to treat my son like a normal child with very little restrictions. I am very lucky because all that Jimmy has to deal with is his blindness; he has nothing else against him. To date Jimmy has participated in weekend and weeklong sleepover camps, learned to ride a two wheel bike, skateboards, scooters, waterskies (religiously), runs to the neighbor’s house to play with his best friend, and if I let him walk around the block. Jimmy travels with a cane except at home and places he visits on a regular basis, I don’t know if this is the right way to do it but for us it works and allows Jimmy to feel a little more normal than always having his cane. Don’t get me wrong it can be frustrating at times to remember that my son is even blind. I’ll talk to him like he is sighted and he looks at me and is like “uhhh mom? I can’t see remember?” I hope through this I can shed some light on how we as a family have gotten to the point we are and how I hope to navigate the next few years as Jimmy enters his teenage years. Stay tuned as we try “keeping up with Jimmy”.

*I wrote that Jimmy is amazing. I mean that but I also want you to know that it has nothing to do with his blindness. Jimmy is just a cool kid, period. Everyone who meets him loves being around him because of who he is. The blindness? Well, that's just icing on the cake--he is a pretty cool blind kid I have to say.