FamilyConnect: A Parent's Voice
by Scott Truax
I would like to introduce Stacey Dodd as a parent who has submitted the following blog. You may follow her on her blog Minding Thomas.
I had never heard of the well-known essay 'Welcome to Holland' until it was mentioned to me via a former work colleague upon finding out how my boy was doing. It was suggested for me to read and I honestly didn't bother with it. I ended up coming across the essay through a national support network's booklet, 'Stories to tell.' I read it and I could relate to it for sure. I wondered about that last sentence and how we come to a certain point along this journey where we realize that we have to make a decision as to whether or not we want to stop mourning the loss of the dreams we had or hold onto it. I think that this is all very well to say but it's not that easy is it?
It never really leaves you. The feeling of loss. The eternal grief. The worry you feel when you fear to nod off to sleep at night. Will my boy have a seizure while I sleep? Will I hear him on the monitor? Will he walk? Talk? No one can answer this, not even an MRI or a neurologist. Just wait and see they say. Those words cut deep. Deep where the pain of loss and grief reside. Those words are so easy for them to say. They have to say it because what else can they really say? This is probably why I can't let go. Because I'm waiting to see? Wait and see what exactly? What my son can or can't do? I think there comes a point where you do accept that you have no idea what the future is anymore but it doesn't ever mean it's okay. It just means, for now, I'll get through today, and the next day, heck or maybe the next hour. Never week by week.
Yes, you go through ups and downs, but more often so when you are a special needs parent. You become numb with grief having been through the stages of grief over and over. You may spend more time at certain stages of grief, and that I believe depends on you as an individual. We all cope in our own ways. If someone asked me how I've coped, I would just say, I got on with it. We do this simply because we have to. We have no other choice. We have to keep pushing on for the sake of our son. We need to be strong for him. I have to be strong for him. He depends on me. I have to keep it together while I can. I can cry later. Sometimes, with all the medical visits, hopsital stays, new treatments or diagnoses you become like a deer in the headlights. Stunned with disbelief or something like that. Some days, you're wired enough to be on the ready with a trillion questions and energy to research every side effect of a new drug. You give up trying to remember names of nurses, simply because there are so many that you end up meeting. It's overwhelming. I could go on and on.
So, yes, as the essay says, you end up somewhere unexpected. You did not plan to be there. You have nowhere to turn, maybe to find the exit, a way out. Maybe press 'rewind'. No. You have no choice. You stay where you're put and you get on with it the best way you know how which is pretty much anyway you like. It is a lonely place, especially in the beginning when you really need the guidance. Somehow, you find your way about. You do meet some lovely people who help you along your way. You become an ace with the language of special needs. Eventually you find a way to forget what the future was supposed to look like once upon a time and you focus on the 'cans'. What can I do to help my son? Where can I seek help or guidance? How can I get through a difficult day? What can I do to help others? How can I meet others? What can my son do that I can celebrate? What can I do to make a difference?
Can you do the can can?
- Personal Reflections
by Scott Truax
White Cane Day is October 15 and falls right in the middle of the month. It is a day of extreme significance for people who are blind as the white cane is more than just a symbol but is also a tool that provides safety as well as independence. Where some prefer the use of a dog guide, all travel training begins with learning to use this simple but effective white cane. Individuals with vision loss have been traveling for a very long time but the typical white cane is a relatively new development as it really was developed after World War II. Without the need for electricity or a cell signal it can detect obstacles and drop-offs, and alert drivers to your presence as a blind or low-vision traveler.
Here are some resources and fun links in celebration of White Cane Day:
- If your children are learning to use a white cane, now their dolls can, too! Check out this great blog post from a mom who bought a doll-sized white cane from an enterprising Etsy creator: Our Girl Just Got a White Cane!
- This recent article highlights some important orientation and mobility strategies for getting around school buildings.
- If your child is just getting start on orientation and mobility skills, check our directory for agencies that provide travel and O&M training to children.
- Some children with low vision may be resistant to using a white cane. One mom and daughter shared with us their struggles, and how they integrated it into the child’s school routine.
- Another parent’s perspective: And Cane Makes Three.
- Sometimes it is a struggle to get our kids the training they need. Emily wrote about her efforts to get Eddie instruction in orientation and mobility skills, and how satisfying it was to see him making process once he had a good instructor, in Have Cane, Will Travel.
AFB's entire family of sites is celebrating White Cane Day:
- VisionAware has a blog post celebrating the day, as well as a post that gives history and information about the cane as it is used in Orientation and Mobility.
- CareerConnect also has a blog post celebrating the importance of White Cane Day.
After all this reading, it would be great to have your child grab their cane and go for a stroll to demonstrate just what we are talking about. How are you planning to celebrate White Cane Day?
by Scott Truax
We are pleased to celebrate October as National Disability Employment Awareness month by launching a whole new series of articles designed specifically for parents of children who are blind or visually impaired.
Employment is an important topic and it is never too early to discuss it. In the next four weeks we will launch the articles by age range starting today with the babies and toddlers.
OK, babies and toddlers—isn't it a bit early for a transition and employment focus? My response is that everything that we do lays the foundation for the skills necessary to compete in the employment market. Become aware of what you are currently doing as a parent that is part of this process. A smart time to teach and reinforce concepts is during those teachable moments that occur naturally in our daily routines. Learn the small things you can start to do that will help in this effort.
Here are our current offerings, which can all be found in the Babies and Toddlers "Transition to Independence" area. Throughout the month, we will focus next on what you can do with your preschoolers, grade schoolers, and finally teenagers, to get them ready for the world of work.
- Laying the Best Foundation for Your Child's Future Career
- Building Knowledge in Infants and Toddlers who are Blind
- Helping Visually Impaired Children Explore the Community
- Making Choices: A Key Skill for Children with Visual Impairment
- Modeling Good Manners as Your Blind Child Learns to Interact
- Teaching Empathy to Visually Impaired Children
- Encouraging Children to use Assistive Technology
We would like to thank the May and Stanley Smith charitable trust for providing the funding for this project. Watch for announcements through October for the entire series. Not signed up yet? We welcome everyone to enroll in FamilyConnect so you can then receive important announcements by e-mail, track your favorite blog and keep up with conversations on the message boards.
by Scott Truax
We are right in the middle of National Hispanic Heritage Month, which runs from September 15 to October 15. It is a time to celebrate the history and contributions of this important culture. We would like to take this opportunity to point out that FamilyConnect has translated its articles into Spanish and users of the program may easily switch from English to Spanish in one click of a button—use the en español link at the top of any page, or the "Leer este artículo en español" link on individual articles.
You can also get started easily with these three downloadable toolkits:
Since our launch in 2008 we have steadily built an international audience of families who visit us, many of whom are in Spanish-speaking countries. If you know of a family who would benefit from our Spanish materials, please let them know. We welcome requests to send FamilyConnect fliers in either English or Spanish and if you are interested, please contact me at email@example.com.
Estamos justo a mitad del Mes de la Hispanidad, el cual se extiende desde el 15 de septiembre al 15 de octubre. Es un momento para celebrar la historia y las contribuciones de esta importante cultura. Nos gustaría aprovechar esta oportunidad para señalar que FamilyConnect ha traducido sus artículos al español y los usuarios del programa pueden cambiar fácilmente de inglés a español con solo el clic de un botón.
También puede empezar fácilmente con estos tres juegos de herramientas descargables:
- Resumen del sistema de servicios para niños" herramienta descargable
- "Después del diagnóstico" herramienta descargable
- "Profesionales del cuidado de la vista que pueden tratar a su hijo" herramienta descargable
Desde nuestro lanzamiento en 2008, hemos ido construyendo una audiencia internacional con las familias que nos visitan, muchas de las cuales se encuentran en países de habla hispana. Si usted sabe de alguna familia que se beneficiaría con nuestros materiales en español, por favor, hágaselo saber. Nos complace recibir solicitudes para los folletos de FamilyConnect, ya sea en inglés o español, y si usted está interesado, puede ponerse en contacto conmigo en firstname.lastname@example.org.
- News from FamilyConnect
by Susan LaVenture
We're delighted to have a guest blog post today from Maria Dibernardo.
Maria writes, "Hi, my name is Maria. I am the proud mom of my 16-year-old daughter, Jewels, who is totally blind from ROP (retinopathy of prematurity) as she was born at only 23 weeks of gestation. Here are some messy activities that we used to do when she was younger and enjoy sharing them today. Hope you and your family have fun with them, too. Remember they could be adapted to any age group."
Carving a Pumpkin
Carving a pumpkin is easy and a great sensory activity. Here are the steps:
- Using two hands, explore the outside of the pumpkin feeling the shape and the grooves.
- Tap the pumpkin fast, slow, and lightly. Take turns making a rhythm and trying to follow each other's rhythm.
- Make predictions on what is inside.
- If you are going to carve out a face on your pumpkin, talk about facial features. With a black marker draw 2 triangle eyes, a circle nose, and smile on your pumpkin. If your child is totally blind, you can have him create the shapes he likes with playdoh or wiki stix, and then use those as your guide to cut out the shapes from textured paper and tape them on the pumpkin.
- Now let's find out what's inside. Cut around the stem about 2 inches away from the step. Remember the secret of carving the pumpkin is inserting the knife at an angle.
- After the top is removed, smell the pumpkin. Okay, now time for the fun part...put your hand inside and explore the inside of the pumpkin. Discuss how it feels.
- Pull out the guts of the pumpkin and explore them with two hands.
- Separate the seeds from the guts, putting the seeds in the bowl on the left side and the guts on the right side.
- Continue cutting out the rest of the pumpkin. After you've cut out the shapes for the eyes and the nose and the mouth, make a puzzle and try to put them back in the right spot in the pumpkin.
For a yummy treat, take this activity one step further. Salt the pumpkin seeds, place them on a baking sheet, and bake until golden brown...yum!
Make No-Cook Pumpkin Pies
This is still one of my favorite fun fall activities. Here's what you need:
- Two boxes of vanilla instant pudding
- One 15-ounce can of pumpkin
- Graham crackers
- Whipped cream
- A cleaned, large, empty, preferably plastic coffee container
- Ziploc bag
Open the boxes of vanilla pudding with your child. Smell the pudding powder, lick your finger and put it into the powder and taste it.
Next, pour the pudding powder into the empty coffee container along with the amount of milk needed as per pudding directions. Now the fun part... Shake the container fast then slow, maybe even to a song. Roll the container to each other back-and-forth. Turn the container upside down, Pat the top, tap the bottom and repeat these motions for about 5 to 7 minutes until you feel the pudding thickening. Open up the container and pour about half of the can of pumpkin inside. Put the top back on and shake, shake, shake, roll, roll, roll, tap, tap, tap, until all mixed.
Set that to the side to prepare the graham crackers. Put several graham crackers in a Ziploc bag and seal the bag. Tap the graham crackers in the bag until they are crushed, tap them slow, fast, maybe to a beat. Pour a small amount inside the cup. Open up the coffee container and pour the pumpkin pudding inside the cup on top of the graham crackers. Top it with whip cream and enjoy.
Make Pumpkin Playdough
Here's what you'll need:
- 2 cups plain flour (all purpose)
- 2 tablespoons vegetable oil
- 1/2 cup salt
- 2 tablespoons cream of tartar
- Up to 1 cup warm water (adding in increments until it feels just right)
- Orange food coloring (optional)
- Pumpkin spice
Mix the flour, salt, pumpkin spice, cream of tartar and oil in a large mixing bowl
Add food coloring to the warm water, then into the dry ingredients (color optional).
Stir continuously until it becomes a sticky, combined dough.
Take it out of the bowl and knead it vigorously for a couple of minutes until all of the stickiness has gone. This is the most important part of the process, so keep at it until it’s the perfect consistency!
If it remains a little sticky, then add a touch more flour until just right.
Put in a Ziploc bag for storage and have fun over and over again.
Finger-Paint a Tactile Pumpkin Cut-Out
Read aloud the story from the tactile book “The Littlest Pumpkin” by Suzette Wright; American Printing House for the Blind; Louisville, KY Catalog No. 6-77504-00
Here's a fun extension activity to do after reading the story. Here's what you'll need:
- Card stock
- Black marker
- 1/2 cup of orange finger paint
- 1/4 cup of school glue
- Pumpkin spice, cinnamon, nutmeg, or any fall spice scent
Cut out a pumpkin shape from card stock paper (see photo).
Draw lines to show the shape and contour of the pumpkin.
Raise lines by tracing with a hot-glue gun.
Mix orange finger paint with school glue.
Let kids finger-paint the cut-out pumpkin (discuss the shape, the color, the grooves).
Take pumpkin spice, cinnamon, or nutmeg and sprinkle onto the wet painting for a nice fall scent.
Go on outside to look for large leaves and bring back home to glue large leaf onto the pumpkin picture!
Personalize any of these activities and make them your own and adapt them to the level of ability of your child. Always remember, it's not the product, it's the process that makes it fun!
- Social Life and Recreation
- Planning for the Future
- Low Vision
- In the News
- Personal Reflections
- News from FamilyConnect
- Orientation and Mobility
- Arts and Leisure
- Online Tools
- Getting Around
- Ask the Experts
- Readers Want to Know
- Home Schooling
- Social Skills
- Autism Spectrum Disorders
- Cortical Visual Impairment
- Assistive Technology
- Public Policy
- Home modification