Family Life When Your Child Has Blindness and Multiple Disabilities

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No two children are the same. This becomes even clearer when children have complex needs. Your child’s strengths and needs are uniquely theirs. Children who are blind or low vision and who have complex needs vary greatly. They have different abilities, interests, and the capacity to use vision and other senses, family background, and personalities. Even children with similar eye and medical conditions may function very differently. They may have a severe intellectual disability or be intellectually gifted. There may be physical constraints due to certain neurological, motor, or other conditions. Children may be talkative or unable to communicate verbally. They may enjoy being hugged or tend to avoid physical contact.

Equipment, materials, and strategies that work well with one child may not be effective when used with another. This can be the case even when they are similarly functioning. However, children who have complex needs usually have a common factor. The combination of their conditions presents challenges when it comes to accessing, perceiving, and processing information and to acting to exert control over their environment.

How can I effectively communicate with my child who has multiple disabilities?

Understand Individual Needs: Recognize your child’s unique communication methods, whether verbal, non-verbal, or through assistive technologies.
Use Assistive Tools: Implement communication devices or sign language as appropriate to facilitate understanding.
Engage Professionals: Consult speech and language therapists for tailored strategies to enhance communication.

What resources are available to support my child’s education?

Early Intervention Programs: Access services that provide developmental support for infants and toddlers with disabilities.
Special Education Services: Collaborate with your local school system to develop an Individualized Education Program (IEP) tailored to your child’s needs.
Parent Training and Information Centers: Utilize these centers for guidance on navigating educational services and rights.

Open Communication: Maintain honest discussions with all family members about challenges and feelings.
Seek Support Groups: Join communities of families facing similar experiences for shared advice and emotional support.
Professional Counseling: Consider therapy to help family members process emotions and develop coping strategies.

How can I advocate for my child’s needs effectively?

Educate Yourself: Learn about your child’s rights under laws like the Individuals with Disabilities Education Act (IDEA).
Build Relationships: Develop strong partnerships with educators, healthcare providers, and community members.
Stay Organized: Keep detailed records of your child’s medical and educational history to support advocacy efforts.

Pressures on Your Family and on You

Parents of children with complex needs may find themselves caught up in all the labels that medical and educational professionals use to describe their children. They may also find themselves overwhelmed with the number of professionals they need to consult about their children’s conditions and by the sheer volume of appointments they need to keep.

As more and more labels come at you, there may be times when you begin to feel as though you are losing focus and losing sight of your child. You can lose sight of their personality or the things the two of you do together. You can forget the important part of your family that your child is. This reaction may be natural, but it’s important to try to refocus on your child. In today’s pressured world, it may be difficult to pause and focus on who your child is, but doing so can be an invaluable process that supports your family life.

Your feelings and expectations and those of the other members of your family about having a child with complex needs may vary. How your child with complex needs participates in family life will vary too. It will be influenced by their age and the severity of their disabilities. For many families, the basic requirements for their children with complex needs are that they

be safe and comfortable;
learn to be as independent as possible;
be able to communicate;
be appreciated, respected, and loved; and
have opportunities to be full-fledged members of their community throughout their lives.

Your family is the key ingredient in helping to make all these things happen.

If You Have Other Children

Siblings can sometimes resent the amount of time their parents may need to spend with a child with complex needs. They may also find it upsetting if they have to take care of their brother or sister when they would rather be with their friends. Additionally, they may be embarrassed about the way their brother or sister looks or acts. If this is the case in your family, talking openly with your children about their feelings may be helpful.

Also, give your other children information about their brother’s or sister’s disabilities. They can begin to understand what is causing the differences they see. It may help them come to ways of coping with those differences. If you need their assistance, explain why, and try to provide times when they can relax and not have to act responsibly. Like all children, they need time for themselves and a feeling of normalcy. If you can provide opportunities for other family members to spend time with just you and just with each other, as well as with your child who has complex needs, you may all benefit in many ways.

To help identify and understand the emotions of your sighted children, APH FamilyConnect recommends reading the book Beyond the Stares : A Personal Journal for Siblings of Children with Disabilities. It chronicles the feelings of children who have siblings who are blind or low vision.

Many families of children with complex needs often find it challenging to involve their children socially with others their age. As children age, the gap between them and typically developing children can become greater and add to the social challenges involved. Therefore, plan for your child’s social success early.

The more involved your child is in family life, the more social experiences they’ll have.
Play games with your child. Tickle and throw them in the air when they’re young!
As your child moves into preschool, show your child how to play with toys that other preschoolers use.
When you’re out together in public, help your child say “Hi” to people or ask them questions. Your child may not do this with their voice. That’s okay! Your child can push a switch to play a message you’ve recorded or use sign language. Sometimes, you may need to help the person your child’s communicating with understand their communication.
Try to dress your child similarly to others their age. Similarly, buy toys that appeal to children of the same age, even if your child doesn’t use them like peers do. Peers may focus on winning a hand-held game. Your child may enjoy holding a hand-held game because the buttons make sounds. Toys can offer great ways of bringing children together socially, even if they use them for different purposes.