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!?)

Nike Flyease...For our kids, too!

Have you heard of the line of shoes that Nike put out for kids with disabilities? They came out a bit ago but I thought it was a good idea to share it because I was worried that people in our community haven't heard about them.

Here's the story behind the Flyease:

I learned about them from our awesome friends, Kristi and her son Jimmy. Jimmy can't wear them (yet) because they were not available in his size.

Why Flyease? Check out this great article:

http://www.huffingtonpost.com/entry/nike-flyease-shoe-technology_us_55a3eec6e4b0b8145f731bde.

**Read this first before you go and buy these**

It is important for our kids to learn how to tie their shoes. It can be a very difficult skill to master. I have taught the (sometimes dreaded) shoe tying lesson several times. It requires concept development, fine motor skill work, practice and a cookie for stress! Encourage our kids to master this!! Work with your occupational therapist on this. However, we do have a population of students that cannot master this skill for a variety of reasons. It's tough to find slip on shoes as our kids get older (especially in high school). It's also really tough to find cool shoes for our kids (again, especially high school age). 

The price point is a little higher than a lot of parents would like to pay. They are about $100-$130. 

Here's the link for the most current offerings of the Flyease from Nike:

http://store.nike.com/us/en_us/pd/zoom-lebron-soldier-8-flyease-basketball-shoe/pid-11029270.

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!!!!!!

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: Holiday Edition

Well hello there again everyone!!! I cannot believe the holiday season is upon us and the weather is getting colder here in Connecticut. PS I hate the winter, I am a summer girl through and through. Anyways, we are finally in our “school” schedule and am still trying to keep up with Jimmy and the cabin fever that is already starting to set in. We had a wonderful Halloween, Jimmy was Gale from Hunger Games complete with Bow and Arrows. Jimmy for the first time in his life actually followed through with carving a “scary” jack-o-lantern. Ever since Jimmy went blind I have tried to do this with him so he could feel the textures of the outside and inside of the pumpkin and every year in vain just after cutting the top and playing with the goo he is over it. What I have done to allow him to do it is let him do the cutting. I give him a little hands on hands direction so he gets the feeling of what it feels like and then hope he can follow…lol We did the same thing this year and he actually did it all on his own. As for trick-o-treating we go with friends and I let him walk to and from doorsteps with his cane and friends. They are always there for help and he loves the independence and not to mention all the candy (which may or may not be hidden from him as to slow consumption, just saying).

 

The next holiday we must tackle is Thanksgiving, luckily we usually have it at our house so I don’t have to worry about new surroundings and trying to navigate that. The only thing he has to worry about is maybe an addition table set up but knows where we always put and it NEVER changes. Unfortunately I have a child who doesn’t really want to help with the cooking of the meal, honestly can’t say I blame him (sorry Oma). But what I have and continue do is make him help set the table or bring things from the basement and so on. He truly loves this holiday, he is one boy who LOVES to have family around just talking and laughing. 

Jimmy helping to stuff the turkey!

After this fabulous holiday where all that matters is family and gratitude for what we have (might be my favorite) we have Christmas. Christmas is his favorite holiday as it is for most children. One thing that happens at our house is that Santa knows how to Braille. All presents for Jimmy have Brailled labels on them so he can find and locate his own presents around the Christmas tree. The first year this happened he could not believe that Santa could Braille and my simple answer was that Santa is magical so of course he can Braille, he has to be able to speak and write all the languages of the countries he has to go to so why wouldn’t he know Braille. He was quite happy with this answer.  So Santa gets the Brailler out and makes the labels, yes it can be undaunting for the amount he might need (mind you they are also made for presents from his grandparents and of course from Mom), BUT to see the smile on his face each Christmas morning finding his own gifts without assistance makes it all worth it. As the years go on Christmas shopping is becoming more and more difficult as Jimmy gets older. When he was younger it was awesome, I just bought him all the hands on toys I could and let him go wild. Now that he is getting older I am finding it harder and harder to figure out what to do for Christmas. He is almost getting too old for toys and all his friends play video games and are away from “toys”.  So as I sit here and write this all I can possibly come up with is maybe a cell phone, which he has been asking for, for years now, but even that I wonder is, is he really old ENOUGH for his own cell phone. This is when being a mom of a blind child gets tricky. I don’t want to buy him toys and make him think he is a baby any more but then on the other hand what does a 10 year old little man actually want? We can do board games, which we have and have modified them ourselves with a braille labeler but what could that BIG present be now that he can’t really use the items his friends get? And this my friends is the question I will leave you with and if you have any ideas let me know :)
-Kristi

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.

Jimmy Has Magic on the Water

Jimmy has some serious magic on the water! Okay, I can't even begin with details about how awesome Jimmy is at waterskiing but here's my attempt. I messaged Kristi, Jimmy's mom, about getting some video of Jimmy because I thought it would be too fun to share with everyone. So quick recap of the amazing Jimmy. He has retinoblastoma, is a Braille reader,  and ADVENTURE should be his middle name!! 

Here's why I want you to see this: I hope you get the message that it's not about what our students see, it's about what they do! Parents, let's encourage your children to take on the world! It may be scary at first but there are great resources out there to help you, guide you and teach you how to do this. Students, do not let your vision determine what you can and cannot do. You may not be a waterskier like Jimmy but there is a lot of ability that stretches past your vision disability. 

Just in case you don't get that Jimmy has a vision impairment, let me tell you he is totally blind. He has been inquisitive, insightful and sharp as a tack since the day I met him as a preschool student. I told his mom when I first met to make sure she start working those ECC skills because I knew that this kid was going to go far in life. Remember, the ECC is what makes quality of life for our kids. She's taking that advice.  It's a challenge at times to recognize which ECC skills are deficient but Kristi can tell you that she takes it year by year as he grows up. I thought it would be fun to pick Kristi's brain and get ideas as she navigates life as a mom of the adventurous Jimmy. Look for her interviews and posts soon!!

The Olympics for any time of the year

The Olympics may be over this year but that doesn't mean that that we can't still have Olympic fun! We did an Olympic Sport Weekend back in February and we had a BLAST! I wanted to blog about the activities that we did because they are super accessible and quite fun! We even learned that the Olympic sport of curling is doable for our kids, too!

Thanks to Ted Stone from the Norwalk Curling Club, we were able to learn all about this fun Olympic sport! He brought an actual stone (see Jimmy with one, above) and he brought an indoor curling set that we used (see below).

Here we are learning about the brooms with our guest instructor Ted.

Then we got on our knees to learn about the target (Jimmy is leading our investigation).

And of course we practiced "throwing" the stone!

Our Olympic competition

Fearless leader Lauren Andersen helping coach our teams (and look cool with the stone!)

We also were lucky to have Eastern Mountain Sports donate snow shoes for us to use (since we had PLENTY of snow this winter!). Did you know that snow shoeing is an awesome activity for our kids too. Think about it for next winter!

My student Leah (now all grown up and an adult staff member for my programs) and Lauren having fun in the snow.

And now back to the sports. We are lucky to have the awesome creative powers of the talented PE teacher, Lauren Andersen, at our disposal. She put together a great set of Olympic themed activities.

Our countries competed in ice hockey by putting a beep ball (great white cane skills practice here).

This one was one of my favorites: the 4 man bobsled (aka scooter boards linked together).

We timed each bobsled in team to team competition.

Our friend Jimmy getting ready for his cross-country ski competition. 

Here we are doing the ski jump. We used the paper cups as markers to measure distance. 

Even my kids got into the fun! Here they are competing in the cross country ski event.

Renata demonstrating the Japan chop stick relay

Olympic Sport Activities

 compiled by Lauren Andersen

Olympics vs. Paralympics:
The Olympic and Paralympic Games run on the same years and use the same facilities. Para means “alongside” and run “alongside” the Olympics. The Paralympic Games are modified Olympic events for elite athletes with a physical disability -i.e. limb loss, visual impairment, etc. The Paralympics are not related to the Special Olympics (which are competitions for individuals with cognitive impairments) and should not be compared to or confused with them (as awesome as they may be!). This weekend we are providing not only experiences with the Olympic/Paralympic Games but also exposure to very real possibilities to our students. 2-Person Bobsled - The first student sits on the scooter with their legs crossed. The second student sits behind the first on another scooter and hooks his/her legs around the waist of the first. Then they travel across the gym and back using their arms to propel them.

4-Person Bobsled - Same as above with 4 students.

Hockey Dribble - Using a hockey or pillo polo stick each student dribbles a beanbag or wiffle ball around the cone on the other side of the gym and back.

Pairs Figure Skating - The first two students hold hands or hook elbows and travel side by side across the gym and back with their feet placed on paper plates for skates.

Cross Country Skiing - Each student kneels on the scooter with their seat on their feet and uses plungers to propel their scooter across the gym, around the cone, and back.

The Luge - Using two scooters that have been tied or taped together, the first student lays on their back on the scooter. The second student gently pushes the person on the scooter around the cone and back.

Ski Jump-. Students take turns jumping off a spring board with two feet, and jump as far as they can onto a floor mat, also landing on two feet. Set up marks on the floor with tape.

Speed/Figure Skating- We have two circles in the middle of the gym that we use. Circles can also be taped down. The very middle circle is the figure skating ice. Students stand on paper plates or pinnies and can make up routines for skating. The outer ring is for speed skating. Students can pretend to skate as fast as they can as long as they are being safe and staying in the circle. We emphasize safety at all times.

Skeleton/Luge- Students lie on their backs, feet first (luge), and pull themselves toward the wall using a rope that is tied from one wall to the other. Once a student reaches the wall, he or she flips onto his or her stomach (skeleton) and scoot headfirst back to the beginning.

Wacky Olympic Relays

(We did each of these activities. Some activities required the use of a guide but overall, everything was accessible!).

GREECE - OLYMPIC TORCH RELAY RACE:
Students line up in teams. Give these two students a "torch"- a plunger. On the signal to begin, the two students will run to the cone and run back. They will hand the torch to the next student in line who will then run to the cone and back. This will continue as above until all team members have had a turn.

Equipment needed: Event sign, 2 Toilet Plungers , 2 large orange cones.

JAMAICA’S JAVELIN THROW:
The first student from each team stands behind the line and throws their "Javelin" ( Noodle) one person at a time. Students may throw their javelins any way they wish. Have the remaining students continue as described above and so forth until all have a turn.
Equipment needed: Event sign, 5 Javelins (5 Fun Noodles)

IRELAND’S POTATO RACE:
Students line up in their teams with the first person from each team standing on a poly spot. Give these two students a hockey stick and a potato. On the signal to begin, these students will use the hockey stick to move the potato around the cone and back to the start where they will hand their hockey stick to the next player in line. This will continue as above until all team members have had a turn.
Equipment needed: Event sign, 3 plastic hockey sticks, 3 large orange cones, small bag of baking potatoes.

JAPAN’S CHOP STICK RELAY:
Students line up with their teams with the first person from each team standing on a poly spot. Give the first student in line two "chopsticks" (rhythm sticks). On the signal to begin, the first student will pick up the rubber chicken from inside the hoop using only the chopsticks. (They may not use hands or stick the chop stick inside the chicken). They will have to bring the chicken down to their stir fry pan, then return the sticks to the next student in line, who then goes to the pan and must bring the chicken back to the group and the process continues until everyone has had a turn.
Equipment needed: Event sign, hula hoops, rubber chickens, and 2 chopsticks per line, stir fry pans

ITALY’S PASTA RELAY:
Students will line up in three equal lines and the first person in each line will receive a piece of string. They will run down to their teams bucket (which is filled with green, red, and white colored pasta) and take out one green piece of pasta, and thread it on to the string and return to the line. The next student runs to the bucket and strings a white piece of pasta and runs back to the line. The relay continues until a line has completed their team necklace in a Green, White, and Red order.
Equipment needed: 3 poly spots, 3 containers, green, white, and red pasta (A few days before the field day....dye 1/3 of ziti RED, 1/3 of ziti GREEN, and 1/3 ziti natural color and mix in a bucket)pasta, string

SWEDEN’S STAR BALL RACE:
Students will line up in two equal lines; the first person in each line is given a star ball. The ball must be passed over the head of the first student and under the legs of the second student, then over the head of the third student ...keeping this pattern until the ball reaches the end of the line. Then, the last person in line runs with the star ball to the front of the line and the pattern begins again.
Equipment needed: 2 star balls (any ball will do), 2 poly spots, 2 cones

AUSTRALIA’S ACTIVITY TUBE RELAY:
Students will get into three equal lines. The first person in each line will receive a activity tube and a tennis ball. The tennis ball is placed top of the tube, and the first person runs down and around the cone. When he/ she returns to the line, they will give it to the next person who will do the same thing. If the ball is dropped, the student must stop, and place the ball back on top before continuing.
Equipment needed: 3 PCV tubes, 3 tennis balls, 3 cones, 3 poly spots

OLYMPIC RINGS:
Students stand in a line with their team holding hands. First person in line stands with hula hoop on their arm. Time how long it takes the team to pass the hoops down their team line of joined hands 5 times.
Equipment needed: 1 hula hoop per team

 Lauren instructing how to perform the "luge".

 Renata demonstrating our "luge" event.

 Renata demonstrating our "skeleton" event.

Favorite PE instructors & goalball officials, Craig Boucher & Alex Specht