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Using Our Voices

A few months ago I became acquainted with an organization called “The Power of Moms. The organization’s mission is to help encourage what they refer to as “deliberate mothering.” In any case, I’ve found it to be a great resource, and truth be told, have become a little obsessed with it. But that’s a story for another day. . The organization also produces podcasts of which I’ve also become a fan. I recently listened to one which I think is a great one to pass along to parents of blind children. It is entitled, “Using Our Voices.” (Episode 45.)

In this podcast, one of the organization’s co-founders is interviewing a mother of a child with spinabiffita. The message of the program however is not really about caring for, or being a parent of a child with spinabiffita, but about how this mother learned to use her voice to advocate for the needs of her daughter. I strongly recommend that those of you reading this post as a parent of a blind child go and listen to this podcast.

Often I come across parents like this mother who don’t know or believe that they have a voice when it comes to advocating for the needs of their blind or low vision child. Many have experiences where they ignore their “gut” instincts as to what their child needs because they are intimidated by “the professionals” in both academic and medical realms. Others find their suggestions or beliefs as to what might be best for their child dismissed as “not a best practice” or “not deemed appropriate” for the child. For example, this past fall I completed and Orientation and Mobility assessment for a kindergartener. His parents strongly felt that he would benefit from using a cane and having more cane travel instruction than what he was presently receiving. (He saw his O and M instructor for a half hour a month despite the fact that he is documented as being legally blind and has a doctor’s report in his file stating that his vision is degenerative and expected to be completely gone within six months.). The parents were concerned because his vision was worsening and he was extremely fearful of traveling in unfamiliar areas. Unfortunately, the school administrators and his O and M professional did not see any reason for him to have a cane or to receive additional services because of the level of vision he presently displayed. Needless to say, these parents felt like they had no voice and continually saw their young child struggling. Their gut instinct was that things needed to change. Fortunately for them, they became connected with individuals who validated these feelings and helped them find their own voice for their child.

Our blind and low vision children have the same rights, opportunities, and potential as their sighted peers. They need only to be given the experiences and opportunities they need. I especially liked how this mother pointed this fact out in this podcast with respect to her own daughter’s potential. I think this is an important lesson for our parents of blind and low vision children to hear. Just because our children can’t see as well as other children does not make them inferior, unintelligent, or incapable.

I could spend hours sharing similar stories and write pages on how parents are the best advocates for their children. But, it all comes down to the fact that you have your child’s best interest at heart and you know your child and his needs better than anyone else. You and your child have rights. I think hearing this from another parent is one of the best ways to help convey this message. I hope you will check out this podcast and that it will inspire you to go out there and find your own voice when it comes to advocating for your child. WE need more parents of blind and low vision children out there to speak up for what is best for our children. Good luck!

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Pages from the Hartle Playbook: What a Jonah Day!

What a Jonah day! (I hope you Ann of Green Gables fans out there appreciated that reference). Today is proof that you’ve got to be tough to be blind.  Our lives aren’t always as glamorous as you might think they are.  So, I thought I’d share my day today with you all, just for the fun of it. 

            Last night, because it was late, and I was distracted, I let my daughter run off with my phone for a few minutes.  My husband was doing the dishes in the kitchen, and well, you can probably see where I am going with this.  Yes, the phone took a bath in the dishwasher.  We realized it about 10 minutes later when I tried to find my phone and we couldn’t hear it ringing, even though we knew it was in the kitchen.  Who knew this one little momentary lapse of attention would result in such a day as today! 

            So, I set off for the Apple store today to see if anything could be done.  (we don’t have a house phone, just our cells.) After getting off to a late start (my daughter has been sick and was up a little bit last night with some congestion), I finally left the house and headed to catch the bus to the mall around 11:30.   The mall is only a little less than two miles away from my house.  It takes about 7-10 mins. To walk to the bus stop, and about ten minutes on the bus to get to the mall.  So, we headed out, bundled up and ready to brave the cold.  Twenty-five minutes after arriving at the bus stop, the “every 10 minute bus” decided to make an appearance.  I struggled onto the bus with my rebellious stroller and wiggly toddler.  Fortunately, this nice woman took my daughter and helped get her to a seat while I wrestled the stroller and tried to keep my cane from hitting the bus driver in the head while doing so. 

Ten minutes later, we were at the Apple store, only to learn that I’d have to buy a new phone.  “Ding, ding,” I remembered I had purchased insurance from AT&T, so we left that store and headed upstairs to find the AT&T store.  Keep in mind, mall navigation for the blind isn’t the easiest thing in that it’s not like you can just walk directly to the stores.  You have to find landmarks and sometimes ask directions to get to the stores you need, unless you’ve been there a lot and really know the place.  So, this took me a little longer.  I also had to find elevators since I had a stroller and it seemed like they were a little out of the way.  I’ll even admit to you that I went in a complete circle around the rotunda of the mall because I missed the hallway that I needed off of it.  This really nice gentleman I’d seen in the elevator, also with a stroller, came up and told me this, right about the same time as I was realizing it, and walked with me back to the right hallway.  I finally found the AT&T store and went in side hoping to hear the great news that my insurance would cover the cost of the phone in full.  NOPE!  The “AT&T Deductable” was as much as the cost of a replacement phone at Apple.  So, I  could either place an insurance claim with AT&T and have a new phone mailed to me, or else go back downstairs to the Apple store and buy a new phone which would be ready for me right then to use.  No brainer right? Fortunately, the Apple tech must have known I’d be back because he scheduled another appointment for me before I left.  I had an appointment across town at 2 p.m., so I’d made the second Apple one for later just in case I needed to come back.  So, by this time, it was nearly 1 p.m. and I still needed to get back home, drop off my daughter with our babysitter, and head out to my other appointment.  The “every 10 mins. Bus” only kept us waiting for about 15 mins. This time luckily, and I got home right at 1:30, just in time to meet the sitter, had she been on time.  She showed up forty mins. Later.  It wasn’t really her fault though.  She had bad transportation issues too and missed her train and had to wait another hour for the next one.  (She is also blind.) In her defense, she tried to call me, but alas, I didn’t have a phone.  Had I been able to drive, I still could have made my appointment within the “late grace window”, but no deal.  So, needless to say, I rescheduled my appointment and hung out with the sitter for a bit at my house while my daughter napped.  Around 4, I reluctantly started the whole process over again and headed to the bus.  This time, we waited for nearly forty-five minutes for the “every ten minute” bus to arrive.  By this time, it was getting dark, and even colder. My toddler didn’t want to wait in the stroller, didn’t want to leave her hood on, and didn’t want to wear her gloves.  Oh yeah, did I mention that five, yes five buses passed us going the other way.  Something was really off with the bus schedule today. 

They say that necessity is the mother of all inventions, and so it was today as I had to invent some pretty creative games to play with my daughter to keep her hands warm and to entertain her while we waited in the cold. An hour after our Apple appointment time, we strolled in to the store.  Fortunately, they squeezed me in since I’d been there earlier, and I was able to get a new phone set up. 

            An hour later, after a quick trip up to Macy’s to return a Christmas gift, we were back outside in the cold waiting on the same dumb bus.  My daughter enjoyed pulling me up and down a step near the stop, and I’m sure my melodious rounds of“If you’re happy and you know it…”or recitations of “Daisy’s dance” from the Mickey Mouse Clubhouse had nothing to do with a near-by couple’s decision to move down the sidewalk a few yards.  

When our bus arrived this time (late again), our boarding of it was quite the scene.  Usually I’m a pro at collapsing the stroller, scooping up my child, and looping the stroller through the other arm, all while still using my cane and getting out my bus pass in a reasonable amount of time.  (I don’t like being that person that holds the bus up for everyone.) But, not tonight.  Instead, the stroller jammed and Kayla started throwing a tantrum –you know the ones where the child arches their back making it nearly impossible for you to hang on to them.  She’s a master at this one.  WE really made a scene too.  A couple of people offered to help, but I couldn’t exactly give them my temper-tantrum-throwing child , nor could I show them how to close the stroller.  And,I couldn’t put my child down to close it myself.  Finally, this sweet young guy grabbed the stroller and drug it onto the bus for me.  He probably just wanted to get me out of the way so the line of people behind me could get on the bus and get warm, but whatever the reason, it helped.  So, I got on, set my daughter down on the seat, and started to wrestle the stroller again.  I lost.  While trying to collapse it, the driver started moving (I thought she was waiting for me, but she wasn’t), and Kayla fell forehead first off of the seat behind me and onto the adjacent seat.  I quickly stopped messing with the stroller and attended to her, announcing that I would not be closing up the stroller.  People would just have to deal with it.  Kayla was okay, and we made it home safe and sound.  I should mention that Kayla also face planted off the bus earlier this afternoon when she stepped off ahead of me before I could grab her hand.  Did I mention I hate public transportation?  Turns out the cold had somehow jammed my stroller’s handle and that was why I was having so much trouble with it today. 

            When I got home, my husband was lying in bed sick with a stomach bug and not really in the mood to hear my rant. So, I tended to him for a few minutes and then headed downstairs to start dinner. Bbut, we’re out of groceries, and I couldn’t just “stop off at the store “on my way home like most people would have done, so we “made do.” This meant eating cheese casadillas (melted cheese on a tortilla) and popcorn for dinner.  Healthy I know. 

            So there you have it, a day in the life.  I really hope tomorrow is a little bit better.  I think I’ll go take a couple of aspirin now and head to bed. 

 

 

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Need some Ideas for New Years’ Resolutions?

Happy New Year to you all and welcome to 2013! Unless you’ve been living in a cave or something for the past seventy-two hours, you’ve probably been bombarded with commercials, TV shows, church sermons, or friends and co-workers talking about New Year’s resolutions”. Generally, when it comes to resolutions, there are two kinds of people: the optimists who make them (myself), and the realists who don’t. But whatever your personality or feelings on the matter, I thought I’d share a couple of ideas of New Year’s resolutions you could try with respect to your blind or low vision child. Below is a list of ideas. I’d encourage you to check them out and choose one or two which you think might be possible for you and your circumstances. Don’t worry if you’re the type whose resolutions typically peter out around Jan. 10th either. There are ideas for you too.

1. if you don’t already know Braille , enroll in a class at a university with a program for certifying teachers of blind students, , enlist a blind braile reader or individual who knows Braille to teach you, or sign up for a program like the National Library Service Transcribers course or a correspondence class from the Hadley School for the Blind.
2. If your child doesn’t know Braille either, and would benefit from it (even children who have residual vision and can read large print can benefit from being dual media readers), make the decision to incorporate braille instruction into their school day by adding it to your child’s IEP this year. Or, if this isn’t an option at present, you could implement one of the ideas given above where you and your child could learn together.
3. Choose one book a week or even a month to transcribe into Braille. Either way, you’ll add 12 to 52 new books to your child’s library by the end of the year. If brailing your own books isn’t a realistic option right now, you could set a goal to purchase one Braille book a month for your child. There are a lot of sources for Braille children’s books online. Seedlings, National Braille Press, and the American Printing House are good places to start. Selection is a little limited when compared with the wide variety of children’s books out there, but it’s a good start to building a library for your child, no matter what the age.
Quick ideas for brailing your own children’s books: You can do this using a slate and stylus and some dymotape , or use contact (sticky clear sheets) onto which you can directly type with a Braille writer. You can then cut out these passages, or apply the dymotape strips directly onto the corresponding pages of the book.
4. Label appliances in your house with dymotape or other tactile markers to help make them accessible to your child (i.e., microwave, stove, oven, washer and dryer, etc.) Even if your child is not old enough to use this appliance yet, as he naturally explores his environment, he will find these indicators and start becoming familiar with them just as a sighted child would do with print.
5. Tackle one new chore which is age appropriate for your child and begin teaching her how to perform the task appropriately. For example, if you wanted to teach your child how to wash dishes, instruct her in a hands-on way how to rinse the dishes and feel whether they are free of food residue. If you use a dishwasher, help show your child how the dishes stack into the dishwasher and how she can use her hands to feel where each goes in the shelves of the dishwasher. Remember to hold the same expectations of cleanliness as you would for a sighted child—no excuses for a sloppy job because your child is blind.
6. Give your child an age appropriate “independent travel” assignment. For example, if your child is pre-school age, this may be something like taking something by his or her self next door to the neighbor’s house wile you watch from your house. For a young school age child, this could be something like going alone to get a gallon of milk at the store and meeting you back at the register. For an adolescent, you may want to start encouraging him or her to take a bus to the mall or public library independently. Look around or talk to friends and family members to see what kinds of activities their children are doing solo and incorporate something into your child’s experience which she has not done independently yet. You could even set a goal to give your child one of these experiences every week or once a month.
7. Help your child find a blind mentor in your area with whom he may be able to use as a resource. This individual should be someone whom you feel will help your child develop good skills and positive perceptions of blindness. (i.e., you may want to steer clear of a blind person who cannot travel independently, is unemployed due to a lack of skills or ambition, or who is negative about his/her blindness).
8. Encourage your child to take up a new hobby or interest. This is a great way to help your child develop new skills, meet people, and learn to try new things without letting blindness hold them back.
9. Teach an etiquette lesson to your child about table manors. Often, blind children don’t learn appropriate table manners because they are unable to watch others and learn through observation, or no one has taken the time to show them. So, set a place setting and go through some important tips with your child. Some topics you may want to address could include: posture, not eating with one’s fingers, using another utensil or piece of bread as a “pusher” to scoop food onto your fork, and sliding your fingers along a table rather than reaching out across the table when looking for things like glasses or dishes. If your child is a teen, you should consider teaching him or her more formal dining skills. This is a good time to begin preparing them for adulthood where they are bound to have experiences attending special occasion dinners, dating, or even dining with future employers and collegues.
10. Consider sending your child to a summer skills training program. Most of these programs begin taking applicants around January-March, so this is a great time to begin researching such a program. I would recommend one of the Buddy or STEP programs offered at the Louisiana Center for the Blind, Blind Inc. in Minnesota, or at the Colorado Center for the Blind. The National Federation of the Blind Jernigan Institute in Baltimore, MD typically offers some kind of STEM related program during the summers as well. There are also a multitude of sports or music camps for blind children and teens as well. I’ll be posting some helpful tips on what to look for in a good summer program very soon.
11. If you are a teacher of blind students, there is a twitter discussion group which meets on Thursday evenings at 9 p.m. ET. Consider joining/following #BRLchat on Twitter. (BTW, you can follow me on twitter as well: @MJHartle23.)

I hope a couple of these resolutions will appeal to you. I’d love to hear what you choose and how things go. Please share other ideas you may have as well. Happy new year to all!