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Being Organized Helps Prepare Parents of Children Who are Blind or Visually Impaired

Every fall the circus returns. It can become the major focus of many families for years. The entry parade is exciting, noisy, confusing, long, and a little bit scary. As the circus gets underway each act takes the breath away. The jugglers handle too many things all at once, trying not to drop anything. The crazy fire eaters swallow amazing amounts of strange things, the clowns (who aren’t really funny) are distracting, and the elephants incredibly perch on a tiny surface while balancing on only one foot. And all the while the high wire acts have people suspended frighteningly high above and acrobats swinging through the air desperate to catch hold of support. It is all just a little bit crazy and looks out of control.

It is fall and our circus is here again. The parade of meetings, appointments, tests, assessments, new diagnoses, recommendations, teaching sessions, and classes are lining up as another new teaching year begins. Families juggle, swallow lots of information, and balance one way or another. Each ‘act’ is essential to their child’s future and well-being. But the whole situation, if not handled carefully, can be crazy.

How can a family remain in control, like the Ringmaster in a circus, so that they maintain balance and don’t miss any important opportunities and keep from feeling crazy? Please read how you can PREPARE.


Topics:
Planning for the Future
News from FamilyConnect
Education

Sooo, What About School in Summer?

Summer school or no summer school is a hard question. It is an individual decision. Some areas have local schools for the blind that offer a range of recreation, independent living skills development, social opportunities, and skills building opportunities in a short burst of fun in a camp-like setting. Depending on what your child's IEP says regarding summer school, there is usually a short 6 to 8-week shortened summer school program in a less structured environment. There are local bible schools/camps through churches, YMCA or YWCA day camp, camps for special needs children, etc. I have mentioned some of these options before as opportunities for social interaction for home schooled children.

This year we opted for no OT, PT, or speech, and we took August off from O&M services. I needed a break with no appointments. I'll be real honest. Home schooling is a full-time job and like all other teachers, I too need a break to rest, recharge, and do nothing if I want to. We did keep the one afternoon a week in the local daycare for social interaction.

There are other things to learn besides academics that are important. This year we are learning to ride a bike, ride on the pond in the paddle boat, and entertain yourself while Mom does something else. I find a dishpan full of water and no-more-tears shampoo along with a few unbreakable dishes gets me an hour and my floor partially washed, LOL. A wading pool will get me an hour of reading on the front porch with a refreshing beverage. We have a few family and friend gatherings and picnics, my favorite. Then there are movie marathons on rainy days.

Okay, so picture teaching 8-year-old twins to ride a bike. One is totally blind and the other is short, as in 4ft short, with seizures and hydrocephalus. So we bought a 12-inch bike and a 16-inch bike with training wheels for their July birthday. How can we make this safe? A no-brainer of course was the helmets: Turtles and Spider Man to match the bikes. A hefty supply of Band-Aids is a must! We have a pretty long driveway that is recycled tar (looks like gravel, but no mud season and provides parking for our 40ft motor home). So we park the car and truck at the driveway entrance, so no one can pull in. Then we have the driveway clear for the 60 to 70-foot length, providing a slightly elevated bike course. We taught pedaling and steering and how to walk your bike back up the driveway, cause I'm not doing it. So now the riding part. Start at the top and watch out below. Good for an hour and a half, requiring parental supervision and nerves of steel. "Coming Through!" Priceless!

Doing something different in summer, whatever it is, is still learning. Learning never stops, just morphs.

Now, it is time to tuck it in and get started in school again. OT/PT, TVI, O&M are all coming back. Sadly our speech teacher is not. I’m holding out hope she will moonlight with Vinnie. Now, like everyone else, it is review time. But OH, the memories we made! The first week of school is under way, with many changes. We are all excited to begin again! Blessings to all as you return to your school year routine, whatever that might look like.


Topics:
Education
Home Schooling
Social Skills

How to Get Assistive Technology for Your Child

closeup of daughter and parent touching an iPad screen together

Editorial note: With school back in full force, you may be concerned about how the school year will progress. Assistive technology is an important component of your child's accommodations, but sometimes the expense can be a hurdle. We're delighted to welcome Erin Sheldon as a new guest blogger, sharing her story about working with the schools to get her daughter Maggie an iPad.


I do workshops for parents on effective advocacy. I compare a parent asking for an iPad to a teenager asking Mom for an iPhone. If your teen comes to you and says, "Mom, I NEED an iPhone!" We all say, "no, you don't, and here is why."

But if our teen comes to us and says: "Mom, as a new driver, I need a way to always find my way home and find my destination. I need a way to get in touch with you at all hours. I need a way to keep track of all my school assignments and deadlines. I need a way to record my work and volunteer hours. I need a way to organize all my school notes to help me prepare for tests. I need a way to research college options..."

Then we tend to say, "OK, that's all legit, let's start comparing our possible solutions." An iPhone could very well be the best possible solution.

What matters is that the teen has not come to us with her own pre-determined solution. When a parent says to the school, "my kid needs an iPad," the parent likely has something specific in mind. The parent has likely seen an iPad provide an opportunity to another child and the parent wants her child to have the same opportunity. The parent is really saying, "My child needs to be able to communicate. Needs to be able to engage with digital materials rather than paper in order to enhance attention. My child needs a keyboard or TTS or STT. My child needs a mobile way to search the web. She needs a way to show what she knows and who she is. My child needs easily adapted materials on the go. My child needs access to 1000s of photos and videos to communicate and engage with the world."

I tell parents that when they ask for an iPad, they have left the school team out of the problem-solving process. If people aren't part of the problem-solving process, then they aren't invested in the solution. But we can never persuade people to a solution unless we agree on the problem. So we need to start with what our child needs to be able to do.

Anyway, I find parents really respond to this kind of discussion and to this kind of analogy.

So often, the problem rests as much with the rest of the IEP team. If the occupational therapist (OT) does not believe the child can engage in any kind of generative writing, then she won't be problem-solving how the child can access the alphabet. If the school team has restricted literacy goals to matching letter names and sounds then they won't be problem-solving how the child can access texts for wide reading. We HAVE to discuss WHY we need technology and access, in order to uncover the assumptions behind each professional's goals.

I say all this as a mom who went out and bought my kid an iPad because the school wouldn't. I say this as a mom who had the special educator, general educator, OT, and SLP all get together to approach me as a group to tell me it was a waste of money to even consider it. I say this as a mom who did it anyway. I say this as a mom for whom iPad technology was SO revolutionary for my daughter that our school board's entire iPad pilot project was performed in my daughter's school as an extension of what we had learned with Maggie. I say this as a parent in a board who now routinely prescribes iPads as a tool for kids with the most significant disabilities to access quality literacy instruction. I say this as a mom for whom our school board AT specialist said to me last May, "Can you believe that only a few years ago we all thought Maggie had profound intellectual disability, but just look at her now."

And I say this as a mom who responded, "Maggie hasn't changed. Her disabilities haven't changed. What's changed is that she now has the technology to provide access and opportunity to show us what she knows."

For Maggie, the iPad has been a diagnostic tool as much as an instructional tool. We now understand her cortical visual impairment, low vision, and auditory processing disorder so much better than we did before. We now understand much more about the accommodations she needs in order to attend and learn. This is information that was denied her educational team before we had the option of seeing her response to touchscreen mobile technology.

Erin
Mom to Maggie, age 11, Angelman syndrome


Topics:
Assistive Technology
Technology
Education
Self-Advocacy

Mixed Emotions Going Back to School

Susan LaVentureFor families it's that time of year—mixed emotions of sadness that the summer vacation time is over, excitement and anticipation of preparation of the new school year, and the anxiety and stress that parents of children with disabilities often encounter. Will my child have the right accommodations needed to make sure his/her textbooks and materials will be accessible? Will there be a specialized teacher of the visually impaired, and an orientation and mobility instructor available to give the time and attention my child needs? And for children who need it, will there be appropriate services from occupational and other special therapists? Is the school my child attends the most appropriate for his or her needs?

You are your child's best advocate. You know your child best. I encourage you to have confidence to follow your instinct and observations about your child's development, strengths, and interests, and take an active role to help create a plan for the types of services and education your child needs. In order to do that you need to understand the U.S. special education law Individuals with Disabilities Education Act (IDEA) that gives you parental rights, and the power to be an active participant in your child's educational planning as part of the team working with school personnel to create an Individualized Educational Program (IEP).

To help you to be an active advocate for your child, you need to understand how the law gives your child rights, and learn what special educational services the school is required by law to provide for your child. You also need to learn about the best resources available for you and your families. The National Association of Parents of Children with Visual Impairments (NAPVI) and the American Foundation for the Blind (AFB) have collaborated to create resources for parents to help you become knowledgeable about your child's special education needs, such as the book A Parents' Guide to Special Education for Children with Visual Impairments. There are also several free excerpts from the Guide on FamilyConnect that can assist you, including IEP checklists.

Enjoy watching your child grow and develop into the human being he or she is meant to be. I've raised three children and they are all special and have different interests and paths in life. It's a lot of work to raise children but it is one of the most rewarding experiences to have.

Please stay in touch with NAPVI and FamilyConnect through the year!


Topics:
Education
Self-Advocacy

It's Back-to-School Time Again: Resources for Parents of Blind Children

children getting on a yellow schoolbus

Across the nation children are returning to school in large numbers. Alabama leads the nation with a start date of August 5th, but others will follow with almost everyone back by the end of the Labor Day Weekend. This is a good time to remind you of the information available to you through the American Foundation for the Blind and its resources such as FamilyConnect.

Technology is a vital component of the skills every child who is blind or visually impaired needs to learn. How do you learn what is new, what is working, and what to avoid? AFB's AccessWorld® Magazine is a free monthly publication that comes to you by e-mail. Register now so you can start receiving it and take a look at the July issue that featured back to school articles.

FamilyConnect has many articles that can help you negotiate the school year:

And much more: explore the Education and Grade Schoolers areas of FamilyConnect for other helpful resources.

Be sure to familiarize yourself with the Expanded Core Curriculum (ECC). The ECC is your guide to making sure that your child has her needs met as a student with a visual impairment. It is important to learn about the elements involved in the expanded core curriculum and make sure that it is being taught and practiced both at school and at home.


Topics:
Education
Self-Advocacy
Reading
Assistive Technology