FamilyConnect: A Parent's Voice
by Susan Harper
Well, it is fall again, my favorite time of year. It's harvest, the weather is good, and finally the temperatures are where I like them. With fall season, begins the school year, another transition. And like fall, not always predictable. Change is inevitable, but not always easy and sometimes decisions have to be made.
Evaluation from Perkins School for the Blind
I’ve always wanted an evaluation for Vinnie at Perkins School for the Blind in Massachusetts. Perkins is 250 miles from our home and three states away. We’ve been there twice over five years ago for workshops for parents. It is a beautiful campus with state-of-the-art resources and programs for visually impaired and blind children and adults.
With a contact that I made through the American Foundation for the Blind, I was able to procure funding for this assessment. We homeschool, so there was no asking the school to pay for this. Oh, we could fight for it, but so not worth the aggravation and stress. The services for the blind in Maine do not pay for this. Maine Medicaid does not pay for this. However, the Trinity Rose Foundation was gracious enough to grant us funding to provide this assessment.
There is quite a lot required to request an assessment. Because we homeschool, I am the keeper of the records. I do a fair job. Perkins requires an extensive checklist of records before they will consider doing an assessment. I rounded up and copied, collated, and organized a notebook with the requested materials. I made an extra copy, an exact duplicate for me. Things sometimes get lost and that’s a lot of work to have misplaced or lost in the mail. Then I had to decide what exactly I wanted Perkins staff to look at and provide feedback. All this took me the month of August to find, copy, and organize. But I did and it is now at Perkins. I’ll update you when we go.
Getting New Glasses
I bought recreational glasses in the past at Walmart, about 120 dollars, because Medicaid would not pay for them. In talking with Vinnie’s ophthalmologist, he thought we could get glasses through Medicaid, but it might take a while. The first pair was the flexible plastic glasses they give to toddlers with a strap on the back. No way was he going to wear those. He hated them. But you can only get one pair a year, another if broken.
So why does Vinnie need glasses if he is blind? It is protective eyewear. Vinnie has light perception at five o’clock in his left eye, but the pupil is unresponsive. There is no way to regulate the amount of light in his eye. This can be painful on sunny days and with glare off the snow. So in addition to protective lenses, we need transitions. We’ve used a variety of dollar store glasses in the past. Vinnie thinks he looks cool! However, they are not safe, but they are cheap to lose if you go to the beach.
Anyway, after three months, numerous letters, frustration of my husband (this was his baby), we were notified that the glasses are approved. This is a whole story in itself! The glasses have not arrived yet. We are waiting.
Struggles with Orientation and Mobility
The most recent transition was a bust. Our orientation and mobility specialist left in June, giving three months’ notice. We started right away requesting a transition with the new person to be assigned. Maine is a large rural state, so there are not many spare mobility instructors and in most cases not enough for adequate services. The Division for the Blind and Visually Impaired (DBVI) is the agency that provides orientation and mobility services in Maine. We were finally offered an instructor from another region, who made a brief visit in June, but not with the previous worker.
The new orientation and mobility instructor scheduled a visit (after I contacted her via email) and it was then that we found out it was going to be once a month. So I wrote and lobbied for priority, because my son is completely blind. I got no response. Anyway, the instructor came this week. She immediately asked me to allow her to communicate with Vinnie, so I backed away and observed. Then I decided to intervene when she was talking down to Vinnie like a small child. Vinnie has issues with expressive language, but normal receptive language and is quite capable of following directions. After she showed Vinnie his back door step, that was it. She needed to understand what Vinnie knows and what he doesn’t know. I asked if she knew Vinnie’s cue words for using his cane. I told her I wanted Vinnie to continue working on quarter-point turns and following verbal directional cues, i.e. in front of you, to the left, etc. She proceeded to tell me she would do her own assessment. When I asked what assessment, she asked why I needed to know.
Just a thought, but why would I need to know? Well, because I am entitled to know what assessments are done, know what it will tell, recommendations that will come out of the assessment, and give consent. I think you can probably realize from my description that communication wasn’t going very well. We parted company. For me, what a relief. I hate having my child talked down to. Worse than that is having someone not tell me what they are doing or listening when I have valuable information. This person was temporary at best, once a month which is not very effective, and new to us. I did follow up with a letter to DBVI letting them know my concerns, some of them yet again. Will I hear back?
Adjusting to New Transitions
So that last transition with orientation and mobility (O&M) didn’t work out. No biggy, as home schoolers we are resourceful. I will take over the training of Vinnie in the community/business setting, similar to what the last mobility instructor did until we have a full-time person. I was going to have to anyway, with a once a month services. It is like my husband (a former music teacher) says, "Piano lessons without practice don’t equal piano players." Same goes for O&M. Communication is key to effective services.
As I’ve said before, "No services are better than bad services!"
We are back in the routine and swing of the school year, working on BOP curriculum. Our teacher of the visually impaired is back two days a week. Review is over and we are moving forward. We are looking forward to the Perkins Assessment.
by Shannon Carollo
Listen, this is where we get creative. Our kiddos want to "trick-or-treat" and that’s just what we’ll do. [Insert sneaky little laugh.] However, don’t think we can’t slip in some orientation and mobility throughout the process.
Here’s what I have in mind.
If "trick-or-treating" really is a motivator for your child, it’s time to invite your child to learn and practice a "trick-or-treat" route. If you don’t know the ins-and-outs of teaching a route, don’t hesitate to ask your child’s Orientation and Mobility (O&M) specialist for assistance. It’ll likely entail utilizing the cane and sensory information (sound, sight, smell, and touch) while traveling along the sidewalk, determining the path with the most homes, identifying intersections, listening for traffic patterns and the safe time to cross a street, and practicing compass directions. When you return home, draw a map of your route and add puffy paint to create a tactile map. Practice the next several days or weeks until the route is down pat!
"My child is definitely not there yet," you say. Okay, no problem. Simply walk down your street (avoid intersections) and help your child identify walkways and driveways with a cane (or even sighted guide) feeling the change of terrain with feet and hands for the littlest ones. Ask a few neighbors if you can practice traveling on the walkways and using the doorbells. Have your child say "Hi! We are practicing ‘trick-or-treating’!" Hopefully conversations will be had and social skills gained! At home, create a tactile map of a straight line (your street) and add small, raised foam squares for the homes you plan to visit. Practice as frequently as possible, bringing your map!
"We are way past learning basic routes," you say. That’s great! I think it’s time to utilize public transportation to travel to the neighborhood with the best potential candy. Perhaps you can accompany your child as he or she follows directions and utilizes landmarks. Encourage your child to solicit assistance from others if needed, and decline assistance tactfully. Perhaps your child can bring along a GPS; Your teen may enjoy practicing use of a smart phone with GPS (remembering to utilize only one ear bud, so he can still hear traffic). Talk about advanced O&M skills!
Two more resources before I "go":
If your child is deaf-blind, check out this article for Orientation and Mobility pointers: Learning to Travel with Both Hearing and Vision Loss
If your child of any age has not begun O&M training, check out our Directory of Services to find a local service provider.
Get Your Child Ready for Halloween
by Shannon Carollo
As the parent, family member, friend, or teacher of a child with a visual impairment, I’ll bet you feel enthusiastic over "White Cane Day" which we celebrate every October 15th. There’s something special about the cane, that’s for sure.
We are proud of the youngster who has a visual impairment.
We are excited about the white cane and the independence it represents.
We are thankful for the protection the white cane offers.
Your Child's Emotions and the White Cane
School-age children and teens also have emotions stirred up over the white cane.
They usually feel embarrassed at the attention the cane evokes.
They usually feel it’s a nuisance because "they don’t need it."
They usually feel angry because it symbolizes they are different.
If this describes your child, you are oh so not alone. Just listen to Allie, who has Peter's Anomaly, describe her quite-unwanted cane.
What to Do When the Cane is Refused
So, what is the recommended approach when a child refuses to use his or her cane?
- Ask why he or she doesn’t want to use the cane. Don’t tell him his reasons are silly or unsubstantiated; just listen and understand, putting yourself in his or her shoes.
- Ask if he or she thinks there could be a good situation to use the cane.
- Let your child know you will give him or her increased independence as cane use increases. (This is true of all parents and children. As children demonstrate consistent safe travel skills and road safety, they can play more independently.)
- Introduce your child to others his age with visual impairments who also emotionally struggle to use the cane.
- Introduce your child to others with visual impairments who understand the importance of cane use.
- Allow your child to decorate the cane.
- Have your child name the cane.
Lastly, as Joe Strechay described, you have to give your child room to fall. When a child or teen realizes it’s better to use the cane than run into objects or fall off a curb, he’ll be convinced a cane is a tool worth using…and celebrating!
What other recommendations would you add to the list? We’d love to hear.
by Shannon Carollo
#InclusionWorks. It’s the theme for National Disability Employment Awareness Month (NDEAM) 2016 and it couldn’t be more true.
Whether your child or teen is solely blind or visually impaired, or your child has blindness and additional disabilities, as AFB President and CEO Kirk Adams said, "For most of us, work is a big part of how we define ourselves and measure our value. For many people with disabilities, it’s also the key to independence."
Yes, your child will value work.
Aspects of work your child may appreciate include executing a routine, socializing, goal-setting and accomplishing, receiving compensation, supporting him or herself, and the act of creating.
Likewise, the world will value your child’s contribution to the workforce. Your child will be an asset to each company.
I remember my transition age students who participated in work experiences over the summers; though not all days were easy, they beamed with pride as they spoke of their jobs, and they also thoroughly enjoyed spending and saving their paychecks! I also fondly remember visiting their jobsites and watching their coworkers seemingly thrilled to have the seasonal help.
Truly, everybody advances in inclusion.
And here are two occurrences that must happen for your child to have successful employment:
Employers must continue recognizing the abilities of people with disabilities; they must know accommodations allow people with disabilities to perform job tasks. Utilizing a few or many accommodations, people with disabilities can be tremendous assets to companies with whatever individual strengths and experiences they will bring to the table. Employers can also be taught to think outside the box and hire folks with significant disabilities for specific job tasks, known as job carving.
Your child needs to prepare for his or her transition to independence. Particularly if traditional employment is in your child’s future, he or she must be acquiring independent living skills, social skills, technology skills, orientation and mobility skills, as well as job seeking skills, and the know-how to maintain a job and succeed at work.
That’s why NDEAM matters for our children. They will value work, and we can be preparing them for the workforce, as well as shedding light on the value of people with disabilities in the workforce to employers.
Ways to Celebrate NDEAM
by Shannon Carollo
This week AFB FamilyConnect is joining the Office of Special Education Programs to celebrate 30 years of Public Law 99-547, which established Part C of the Individuals with Disabilities Education Act (IDEA).
Won’t you join us in celebrating 30 years of early intervention services to children ages birth to three?
Show your support of early intervention (EI) services by letting the world know how it has affected the life of your child. What difference has it made? Share your response on social media and add the hashtag #babyIDEAis30!
And just what are we celebrating?
- Early identification of special needs in children.
- Planning and providing free and federally-mandated, assessment-based special education services, documented in each child’s Individualized Family Service Plan (IFSP).
- Swiftly engaging families to provide support.
- Coordination of a variety of special education services, including early education programs.
- Transitioning children from early childhood services to school-age special education services.
Let’s get celebrating!
To find your local early intervention services, utilize AFB FamilyConnect’s Find Services tool.
To learn more about early intervention services and how you can be an effective advocate for your child, visit AFB FamilyConnect's Infants and Toddlers section.
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