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Empowered to Work with Your Visually Impaired Child’s Medical Professionals

You + your child’s ophthalmologist + the pediatrician + any necessary therapists + medical specialists who manage any chronic or acute problems = your child’s robust medical professional team.

You are a key member. Yet, it isn’t uncommon for parents to feel void of expertise and, therefore, to take a passive role or back seat in medical evaluations and interventions. I’m here to remind you that your child and his or her medical personnel need you, whether or not the need is acknowledged, as you are the expert on your child and the voice for your (young or nonverbal) child. The team needs you to remain informed, to advocate for your child’s needs, and oftentimes to educate them about blindness or a visual impairment.

Remain Informed

If you suspect your child may have a visual impairment or if your child has received a diagnosis of an eye condition, you’ll want to confidently seek answers to lingering questions such as, "What can my child see, How can I manage the eye condition, What services does my child need now, and What questions should I ask the doctor?"

Serving as a roadmap for remaining informed as you work with medical professionals is the FamilyConnect resource, "Working with the Medical Professionals When Your Child Is Blind or Visually Impaired." I encourage you to read the collection of articles, giving you information needed to advocate for your child.

Advocate

As you interact with your child and notice any possible need for medical intervention, it is you who seeks medical expertise and requests evaluations. You are your child’s advocate for medical services.

Emily Coleman gives you a peek into obtaining and declining therapy for her son, Eddie, who is blind with additional disabilities, in the blog post, "Growing Up in Therapy."

Educate

Oftentimes your child will receive medical services from a professional who is unfamiliar with blindness. It is then you will briefly educate the professional in order for your child to be most comfortable and to be treated with utmost dignity.

To help you consider what needs to be communicated with medical providers, read "5 Tips for Medically Treating a Child Who Is Blind."

So yes, parents and key family members, you are an integral part of your child’s medical team. Remain informed, advocate, and educate.

Additional Resources

The Green Button: A Lesson in Hospital Advocacy Learned from My Sister Who Is Blind, Mayra's Story

ADA Checklist: Health Care Facilities and Service Providers

Labs and Crocodiles


Topics:
Employment
Independence
Low Vision
Online Tools
Planning for the Future
Self-Advocacy
Social Life and Recreation
Social Skills

Fostering Strong, Healthy Bonds Between Siblings When One Child Has a Visual Impairment

Families who have a child who is blind or visually impaired spend much time and energy teaching concepts which would otherwise be learned incidentally, demonstrating self-care and home management skills, addressing accessibility concerns, visiting specialists, attending educational planning meetings, and responding to questions of passersby and family members. Siblings can feel forgotten. Siblings can feel bitter. Siblings can feel jealous. Siblings can feel afraid. Siblings can feel embarrassed.

In an effort to address these and other potential feelings of siblings and to share how to encourage healthy relationships between siblings, I have gathered FamilyConnect resources on the topic.

Here you’ll find lessons learned from Emily Coleman, mom of three: two daughters and son, Eddie, who is visually impaired and has autism:

Emily Coleman's children standing together outside, prepared to head off to school

Here you’ll find additional tips on proactively addressing the concerns of siblings:

What additional suggestions do you have for our community? How have you encouraged healthy family dynamics? We’d love to hear.

Additional Resources

Tough Questions

Meet Families Just Like Yours—Families with Children Who Are Blind or Visually Impaired


Topics:
Low Vision
Personal Reflections
Planning for the Future
Social Life and Recreation
Social Skills

Autism Awareness Month: Could My Blind Child Have Autism?

We welcome April with open arms, for not only is it one month closer to warmth (finally), but it’s also Autism Awareness Month. Many of you have children who are blind or visually impaired who have been diagnosed with autism, and many others have children who are blind or visually impaired whom you question if have autism. This month—and truthfully, every month—we celebrate these children.

Shared Attributes

As you likely already know, children who are born blind or significantly visually impaired often share some attributes with children who have autism. Consider the following:

  • Self-stimulating behavior such as rocking, nail biting, eye pressing, or picking
  • Avoiding eye contact/inability to hold eye contact
  • Sensory seeking/avoiding
  • Difficulty engaging socially
  • Echolalia, or repeating what was heard

These attributes do not represent every child who is blind or every child who has autism, but they are commonly found in both groups of children, often manifesting for different reasons.

Does My Child Have Autism?

If your son or daughter who is blind or visually impaired has many of these overlapping attributes and any delayed communication development, it can be challenging to determine if he or she is on the autism spectrum.

I encourage you to not fixate on whether or not the label fits but on seeking interventions that support your child’s current and future independence and community involvement.

After wrestling with the appropriateness of an autism diagnosis for her son, Eddie, Emily Coleman recognized with a pediatrician’s help that Eddie would benefit from interventions available to children who have autism, regardless of if the diagnosis fit. Read how she embraced Eddie’s diagnosis of autism in addition to his diagnosis of a visual impairment in the blog post, "Autism Awareness Month: The Child Versus the Label."

Telesupport Group

If you would like to speak with other families who have a child with blindness and autism, or a possible diagnosis of autism, learn about a telesupport group available to you in the blog post, "Children with Autism and Blindness: Misunderstood, Mislabeled, and Misdiagnosed."

Let’s celebrate and support our children!

Additional Resources

World Autism Awareness Day: What I Love and Hate About Autism

Multiple Disabilities: When a Blind Child Has Other Disabilities

Could My Visually Impaired Clients Be On The Autism Spectrum?


Topics:
Autism Spectrum Disorders
Planning for the Future

Everything You Need for a Memorable, Accessible Easter for a Child with a Visual Impairment

If you take a walk down memory lane to recollect your most treasured Easter celebration as a child, what comes to mind? I think about visiting my grandparent’s home in Tampa, Florida, wearing a new-to-me fancy dress that could twirl just so, searching diligently through the grass for plastic (coin-filled) and previously hand painted hard-boiled eggs, eating grandma’s homecooked ham, and swapping giggles and treats with my siblings and cousins. No doubt the day began and ended with my dad reading the resurrection story. Thirty-some years later and I vividly remember the details.

So, how does a family who has a child who is blind or visually impaired adjust these or similar traditions in order to create an accessible, meaningful Easter holiday—one which will be fondly remembered 30 plus years down the road? Here you’ll find a few good resources and suggestions.

First, read "Including Your Child Who Is Blind or Visually Impaired in Easter Traditions" in order to

  • peruse suggested activities such as accessible crafting and tactile egg decorating;
  • consider home decor to enhance the senses;
  • gather appropriate, accessible toys and basket fillers;
  • think about concepts which can be taught during the Easter season;
  • learn how to involve your child with food preparation; and
  • contemplate how to tell the resurrection story using real artifacts.

Additionally, you can create a fully accessible Easter egg hunt for your child who is blind or visually impaired and any sighted siblings or family members. Utilize the following resources to learn how "beeping Easter egg hunts" came to be, and how to create one for your family:

Lastly, no matter how simple or extravagant your Easter celebrations, remember to slow down and enjoy the traditions with your loved ones. Take it from Emily Coleman: Happy Easter and a Holy Event for My Child Who Is Blind!


Topics:
Holidays
Low Vision
Social Life and Recreation

Celebrating Passover? Here’s How to Involve Your Child Who Is Blind or Visually Impaired

Recently, FamilyConnect composed an article entitled "Making Holidays Meaningful for Your Child Who Is Blind or Visually Impaired," which is a compiled list of holidays organized by season—each holiday links an article sharing specific strategies and inspiration to ensure a child or teen with a visual impairment can fully participate in the elements of the celebration.

One upcoming celebration or commemoration is Passover, which begins Friday, March 30th, and ends on Saturday, April 7th.

What Is Passover?

Passover is a time to remember the liberation of the Israelites from their captivity in Egypt, as narrated in the Hebrew Bible. You see, Pharaoh, ruler of Egypt, had enslaved the Israelites for 400 years, cruelly using them for hard labor.

Moses, God’s prophet and the leader of the Israelites, forewarned Pharaoh of terrible plagues that would strike if he would not permit the Israelites to escape.

Pharaoh would not yield even after nine gruesome plagues or afflictions. Moses warned of the 10th and worst plague—death of firstborn males. However, in God’s mercy, if an Israelite family would spread the blood of a spotless lamb across their doorpost, the devastating plague would Passover, or be spared from, the home.

Pharaoh finally surrendered and released the Israelites who fled in haste, crossing a miraculously-dry Red Sea.

Resource for Involving Your Blind/Visually Impaired Child in the Celebration

Passover celebrations include a time of preparing the home and partaking in Jewish ritual meals. To help you gather ideas for making the traditions meaningful and accessible for children and teens with visual impairments, please utilize the article, "Including Your Child Who Is Blind or Visually Impaired in Passover Traditions."

Let us know if you have additional suggestions for making Passover accessible, meaningful, and memorable for a child or teen who is blind or visually impaired!

Additional Springtime Resources

Including Your Child Who Is Blind in Spring Sports

Structure a Meaningful Take Our Daughters and Sons to Work Day for a Child Who Is Blind or Visually Impaired

Summer Camp for Youth Who Are Blind or Visually Impaired—Enrollment Time!


Topics:
Low Vision
Planning for the Future
Social Life and Recreation

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