FamilyConnect: A Parent's Voice
by Scott Truax
We have just returned from the National NAPVI conference for families held this past weekend in Chicago. We were so grateful to meet parents and teachers from around not only the country, but the world. (Kudos to the mother, aunt, and baby who traveled all the way from Australia!) The message families gave us is that they need for more information on everything from dealing with bullies, to coping with the frustration and social challenges of being a non-driver. With so many great ideas, we will be working to add to our current collection of articles in both English and Spanish.
There were so many speakers and topics that there was something for everyone throughout the three days. From the many sessions here are a few highlights that we heard:
The Friday night reception was filled with inspiring speakers including the Chicago Lighthouse Board Chair Dick Schnadig, President emeritus of the Chicago Lighthouse James Kesteloot, and attorney David Lepofsky, along with a panel of young adults who talked about their blindness.
Matt Simpson, of USABA, acknowledged that "Sports is not the end goal, right? The goal is to live a happy, healthy, productive life. But sports can be a means to that goal." He noted that his track record was one of "occasional success with an underlying theme of many, many failures" and spoke movingly about how his parents "allowed me to run around that track, and run into that hurdle. And that's the best thing that my parents have done for me, is allowing me to succeed or fail on my own."
He tried several sports (including the aforementioned track with that unexpected hurdle) before finding the sport of goalball—the only sport specifically created for people who are blind or visually impaired. His dad said, "Well, we'll figure out what it is," and they actually started a goalball team, because there wasn't one in their town. The rest is history.
Kevin O’Connor, ex-president and founding member of NAPVI, shared some of his best IEP tips:
- Bring food. “Teachers who didn’t even teach our son came to our IEP meetings, for the pizza.”
- Sit across from your spouse, so you can exchange looks with each other, and also influence the two people sitting on either side of you.
- Tell your child what they’re doing right, but also tell your child's doctors and teachers what they’re doing right. If you ask, "Do you want to know what I liked about what you said today?" — nobody will say no to that question.
If you were with us in Chicago please share with us some of the tidbits you learned.
- News from FamilyConnect
Five Summer Time Activities That Buy Parents of Preschool Children who are Blind or Visually Impaired a Few Minutes of Free TimePosted on 7/7/2015 at 3:37 PM
by Shannon Carollo
Buying parents a few minutes of rest? Am I a bad mom? No, simply striving for emotional well-being. After all, we parents must prioritize our own emotional health in order to best meet the needs of our children, particularly because our job responsibilities include repeatedly diffusing tantrums and providing around-the-clock care. Not a job for the faint of heart or mind.
So how do I buy myself a few minutes of free time without the use of television? Not that I'm completely against TV, it has its purpose, but I prefer guilt-free free time that drives my daughters' learning, creativity, overall physical fitness, or hand strength/ dexterity. My favorite 5 activities my children play that give us all "free time":
- The bounce house. We bought our girls a small indoor/outdoor bounce house for Christmas a few years ago, and it has gotten countless hours of use. I can set it up indoors and leave the room for a few, or set it up outdoors and take a seat on the porch while they unknowingly become more fit, absorb vitamin D, and work up an appetite. For children who are blind or visually impaired, a bounce house is a wonderful way to increase strength and balance with no accommodations needed.
- Molding and shaping with dough. I ask my preschool daughters to help pour and mix ingredients to make an egg-less cookie dough recipe. We make dough without eggs so they can eat the dough risk-free. Anyway, we make a double batch so the girls can squish and shape their batch while the first batch bakes, and they will continue to "play baker" easily for an hour. Voila! We escape the summer heat while I get an hour of free time and they gain sensory play, hand strength, and creativity.
- Listening to a recorded story. I usually love reading to my girls, but there are times I opt to play a recorded story and get a few minutes to pay an online bill or check my e-mail. Plus, I remember the vivid adventures the radio show "Adventures in Odyssey" took me on as a child. The girls gain a love of stories, increased vocabulary, and improved listening skills. If your child is blind or visually impaired, it can be particularly helpful for comprehension to enjoy an activity together, such as swimming, followed by listening to a story about swimming.
- Legos. We love to build structures together, and the girls enjoy building for a few minutes by themselves. They play indoors on an old children's table we converted into a Lego table, or they play on the go (for instance, while camping) on Lego building plates we glued to scraps of wood.
- Creating nature art. In the cool of the day my girls and I will take a neighborhood walk and collect nature items of interest. We talk about each item's weight, texture, size, scent, color, and purpose. While inside, the girls enjoy cutting, gluing, and taping the pieces on cardstock.
Do you have activities your family enjoys that enable free time for all? I'd love to hear.
To peruse additional activities your child can perform independently or with a buddy, read through Parent's Perspective: Free Time Activities for Children Who Are Blind and Have Additional Disabilities. To make toys and activities appropriate for your child with a visual impairment, read the FamilyConnect article, Ideas for Adapting Toys and Materials for Blind or Visually Impaired Preschoolers.
by Susan Harper
Traveling with children is a challenge at any age. So I have to say this isn’t about traveling with a visually impaired child, but traveling with any child. We have a core group of children who are the current family. So, what the heck is she talking about core family?
We have a large family of 14 children. 11 of them are adopted. The most living at home at any one time was 9. As they grew up, we added one or two more through birth and adoption. Our children were of various ethnic backgrounds, the oldest adoption was 12, and had a variety of developmental/emotional needs. Nowhere in here did I say “Special,” because each was special and unique and my child. This in itself has been an amazing journey.
If you are packing for a day or a month or a year, with kids, planning ahead for you is a must. I start with a list of things I’m going to need. I am a list maker and even my children and husband have learned this is a good organizational tool. I make a list of medications, clothing, optional items, favorite snacks and drinks. You’ll probably use a cooler on a regular basis. Soda and bottled water is so much cheaper if you bring your own.
MEDICATIONS are a must. I always put in enough for the day and another day’s worth. If I break down, get stuck, or decide to stay overnight, I’m all set. We can all live with the same clothes or without a tooth brush, but seizure medication or asthma meds, not so much. If you have rescue medications, make sure to pack them as well. For longer trips, make sure you bring medical records or at least a list of doctors with phone numbers and a list of all medications.
Next is the first aid kit. I don’t mean one of those you buy; I mean one you keep in the car anyway. It will include Band-Aids (3 inch ones are great for knees and elbows), antiseptic ointment, tweezers, ace bandage, cold and hot packs (the ones that you squeeze to get to work), Tylenol, Ibuprophen, Benadryl, masking tape (my go to for lots of things), and a blanket. You might want some bug spray if you are traveling in the Northeast. We have a lot of Lyme Disease. Bug spray with deet will work to prevent those pesky little ticks from biting. You may have other things you want to add.
We have AAA Plus. It covers our cars and RV. They will bring you 5 gallons of gas if you run out, fix a flat tire, tow you to a garage (Plus will allow you up to 100 miles of towing), and assess if you are safe. If you are not safe, then you will be given priority for faster service or be directed to a safe area. You can get free maps, trip itinerary, and even travel plans. We don’t travel without it.
Your trip does not have to be expensive to see some great sights throughout the country. You can obtain a “National parks and Federal Recreational Land Pass” for free. Ask when you go through the gate of any Federal recreation entrance. Most national parks will be free, although in some parks fees will still apply, but be discounted. It is a free “Lifetime Pass for U.S. Citizens or permanent resident, medically determined to have a permanent disability that severely limits one or more major life activities”.
There are 6 of us, 3 adults (19 year old takes up an adult space), twin 8-year-old boys and a 12-year-old girl. We have a 5 passenger jeep and a 3 passenger truck, so unless we are going close by we take our RV with the jeep in tow.
My favorite way of traveling is in the RV. We have a 40 foot motor home, that is we and the bank own it. It is our 3rd RV. Do not think you need an expensive RV to travel. Our first RV was 28 foot Class C motor home. It was used and cost $24,000.00. It was a Ford 350 truck with an RV. It was great fun. It slept 8. We put the babies in their car seats up front in the passenger seats at night. Our son slept in the overhead. Our two grandchildren 5 & 7 slept in the convertible bed from the kitchen table and seats. Our two girls slept on the fold down bed. My husband and I slept in our bed in the back, which was a modified queen. You should really check the bed sizes when looking at RVs. We had a full bath with shower and an adequate kitchen complete with refrigerator. We had 10 seat belts.
One of our favorite activities is going to a drive-in movie. They have us park in the back row. No yucky bathrooms or one of us taking them to bathroom. The kids would sit in the overhead over the front seats and watch the movie. We sat in the front seats in the driver’s area. Babies went to sleep. We had a microwave to make popcorn, beverages in the fridge, etc. If the kids went to sleep, no biggie, we let them. Sometimes we would just go to our favorite Walmart “RV Park” afterwards. Then we’d all sack out.
If you are going to boon dock at a Walmart parking lot or at a truck stop, make sure they have 24-hour surveillance for your safety. We also make sure there are other RVs and/or trucks parking overnight. Do not stay in rest stops, unless it is an emergency. Then make sure there is 24 hour surveillance (TV cameras) so there is security.
I suggest getting the book, “Exit Now” and a good “Atlas” of road maps for the US. “Exit Now” lists all the interstates in the country and what services are available at each exit. This includes RV friendly businesses and campgrounds. A GPS is great, but there are times, when I just want to take a different route for whatever reason. Sometimes the GPS doesn’t give you the best route in terms of road conditions. This is where the Atlas will really come in handy. It is also useful to teach map skills.
If you have a handicap parking placard, by all means bring it. It will be so useful. For us, we could park the RV closer to the entrance for an activity. When we were at Disney, this got us right outside the main gate, which is still a far walk with a child who needs to leave and find a quiet place. For those of you who use the white cane, keep a spare in the car or RV. I always do, so that if I get somewhere and I forgot to bring my son’s, he forgot it, or it gets broken, I have a spare.
Clean up the house before you go. Pay bills that will come due. If you take care of home before you go, you won’t come home to a dirty house. Your RV and/or car will need cleaning and there will be laundry from the trip. The last thing you want to do when you come home tired from a vacation is clean house, clean up trip mess, and get ready for work and school the next day. Better yet come home a day early and you have a day to get “caught up.”
Know your destination, your needs, wants, and limits. Make lists and prepare ahead of time. Doing a little along is easier than doing it all at the last minute. I don’t get stressed out if I plan and have things ready a few days before departure.
I am an avid RVer. I love to just take off, even if it is just the weekend. So come spring, my RV gets serviced and packed. I am always ready to leave on a moment’s notice. For me it is not about the destination, so much as the journey.
by Susan LaVenture
July 10-12, 2015
We are just two weeks away from the NAPVI National Family Conference to be held in Chicago. It's not too late to register and join us! Come and meet www.FamilyConnect.org bloggers, authors, and web team for a special networking seminar for FamilyConnect members held on Friday afternoon 2:00-4:00 pm at the Chicago Marriott at Medical District/UIC Hotel. Come and give your feedback for the further development of FamilyConnect and learn how you can be involved!
Here are some of the other conference highlights:
- Meet world-class ophthalmologists
- Learn at the 35+ breakout sessions led by specialists
- Receive one-on-one coaching with adaptive technology experts
- Make college-bound scholarship connections
- Meet AFB's FamilyConnect web team
- Enjoy all-day childcare and adaptive sport activities for visually impaired children and their siblings
There will also be plenty of social networking opportunities, including an opening night reception, an ice cream social with live music, and much, much more. Come join us and have some fun!
Executive Director NAPVI
- News from FamilyConnect
by Scott Truax
We are kicking off the summer season with a roundup of items to help you make the most of activities, events, and just plain old ideas that can be fun. We are excited to be co-hosting a Summer Blog Party with WonderBaby. Bloggers, please join in by writing about your summer plans and sending us the links. We will share all the posts and links with families.
From FamilyConnect you can sign up with FamilyConnect to get alerts as cool activities and camps are added to the calendar.
Follow our blogs as guest bloggers will be adding new ideas and stories throughout the summer:
- Finding fun things to do when you are visually impaired
- Track the FamilyConnect blog
- Summer is here: now what?
- Follow Emily's blog
Some oldies but goodies from FamilyConnect
Orientation and mobility-themed summertime fun
- Incorporate orientation and mobility skills into summertime fun
- O&M activities at home for your young child who is blind
- Grade school-age O&M activities for children who are blind or visually impaired
Planning ahead to get the most out of summer activities
- Tips for going someplace new with your blind or visually impaired child
- Experiencing the world firsthand: creating learning opportunities for children who are blind or visually impaired
Are you attending this summer's NAPVI conference?
- Check out the full program for the NAPVI International Family Conference
- The Sandy's View blogger talks about their experience with summertime and sport activities, and encourages everyone to come to the NAPVI conference
Ideas from WonderBaby
- 36 Fun Summer Activities for Kids Who are Blind or Multiply Disabled
- Surf Camp for Blind Kids—Indo Jax Surf School's Visually Impaired Summer Camp takes place at Wrightsville Beach in North Carolina for a week each July.The camp gets bigger every year and includes sighted siblings as well.
Join the Blog Party! Here Are More Summer Tips From Other Parents
Are you planning any new activities or experiences for your blind child this summer? How are you preparing? Any advice to share with other parents? Let us know! FamilyConnect and WonderBaby.org are inviting bloggers to write about their summer plans. Just send us a link to your post and we'll share it!
- Road Trip! 20 Ways to Keep Your Blind Child Entertained on a Long Car Drive—How’s your child in the car? Some kids hate traveling and some have mixed feelings (I know one little girl who’s fine as long as the car is moving, but freaks out when it stops...her mom HATES stop lights!). Here's some great advice on how to keep a child who is blind entertained on a long trip.
- Summer Doings—What do you do to stay busy in the summer? Erin and her family fill the long, lazy days with shopping, ice cream, tea parties, bikes and a slip-n-slide!
- Kurios, Lego-Splosion and Other Summer Happenings— We've been in the throes of summer here lately — the temperatures heated up, and we've been enjoying the long days and warm weather. Days and weekends are full of swim practice and swim meets, birthday parties, playtime with friends, and keeping cool in the basement.
- Traveling With a Child Who Is Visually Impaired: It's All About the Journey—Susan, an avid RV-er, writes about how to prepare so you can enjoy your summer travels. Make lists and prepare ahead of time. Doing a little at a time is easier than doing it all at the last minute.
- The Emerging Risk-Taker—Emily writes, "As much as we wanted to step in and “teach” him about the ocean...we let him teach himself. He quickly learned the pattern of the waves, where to find dry sand, and where to find the ocean spray. He walked back and forth, and up and down the beach...100% independent."
- Ideas to Engage Students with Significant Multiple Disabilities in Activities During the Summer Holidays—Summer activities can be a struggle to when it is too hot to go outside. It can be helpful to make the long summer days enjoyable by planning a daily activity for the week. For example, Mondays are sensory days, Tuesdays are art, Wednesdays are literacy, Thursdays are Music and Fridays are toy days.
- The Day I Signed Up My Daughter for Baseball—Have you considered enrolling your child with visual impairments in a sports program, whether inclusive or distinguished specifically as "special needs"? We did and I'm so happy with our decision!
- Tommy's Mainstream Daycare Experience from the blog Thomas Marshall Does It All
- What is tyical Summer When you're an Atypical Family? This blog from the Schnaderbeck family that shares their summer adventures over the years.
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