Build Your Own Village - A Guide for Parents of Children with Special Needs

I'm a big believer that villages are an essential tool for parents of children with disabilities. As a deaf Mom who raised a late diagnosed child with hearing loss, we had very specific needs. I had to build my own well-crafted village. It wasn't easy, but it was well worth it!

Why do you need a village?

Support - Finding people who have walked in your shoes or are currently at the same stage as you can be a tremendous source of strength. Parenting always comes with a range of emotions and this is never more true than when you're a special needs parent or caregiver.

Education - Often, parents do not have the disability their child has. Upon diagnosis, it can be very overwhelming to learn everything you need to know and time can be of the essence. The right village members can make this process go faster and easier.

Guidance - Important decisions come up often and it is helpful to have a sounding board.

Networking - The quickest way to find good referrals for programs, therapists, doctors, etc. is to check with members of your village.

Friendship - Having people to lean on, laugh with, cry with and celebrate the wins with keeps you mentally healthy.

Who should be the village members?

Here are some suggestions. Be sure to add the various types of respected professionals you interact with in regards to your child.

• Other Parents

• Teacher of the Deaf

• Speech Language Pathologist

• Auditory Verbal Therapist

• Audiologist

• Early Intervention Specialist

• Therapists

• Cochlear Implant Center

• Otolaryngologist

• Public or Private School

• SEPTA (Special Education Parent Teacher Association)

• National and Regional Parent Organizations

I found the Alexander Graham Bell Association for the Deaf and Hard of Hearing and the Children's Hearing Institute to be very helpful village member organizations. Hearing First is another good resource for parents.

How do you build your village?

Networking is key.

• Seek out friends and neighbors who may know other parents of children with hearing loss or other special needs.

• Contact your local school district.

• Research and contact schools for kids with hearing loss or other special needs.

• Ask all medical, educational and therapeutic professionals you work with.

When do you start building your village?

Immediately!

The sooner you start building your village, the sooner you will have more tools and good professionals to support you in your efforts of raising your child. A solid, well-built community will be of tremendous benefit to you, your child and your family.

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Have other ideas for building your own community? Leave a message in the comments below. We'd love to hear from you!

Paula Rosenthal, J.D. (she/her) is deaf and uses cochlear implants to hear. Her husband and one of her three children also use cochlear implants. Paula is an award-winning advocate for people with hearing loss and their families. She blogs at PaulaRosenthal.com and is available for speaking engagements. To contact her, please send an email to thepaularosenthal@gmail.com.

Interested in this article for your publication? It is available for syndication.

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8 Tips for Building Self-Esteem in Children with Disabilities

It is essential to build self-esteem in children with disabilities as they develop, just as we do for other children. Parents, caregivers, teachers and healthcare professionals often make up the community that surrounds them. Here are a few ways everyone can work together to help children feel properly supported and cared for.

1. Let the child speak.

Let the child speak for themself as often as possible even if their language is limited. When appropriate, direct questions to them, not the adult with them. Be patient, look at them and listen attentively. By doing this, you are validating that what they want, say or need is of significance. Plus, you will be demonstrating important skills of mindfulness, listening and interactivity.

2. Treat the child the same.

Treat children with disabilities the same as you would other children. Don't use their disability as an excuse for inappropriate behavior. Children can be very perceptive and take cues from what you say or how you act. Giving in to a child, pitying them or making things easier for them can all backfire later. Siblings and classmates may become resentful for any 'special' treatment that is given to a peer. Or, they may learn by poor example and treat the child differently than they would other friends and acquaintances.

3. Teach the child manners.

Teach the child about manners and forming friendships as early as possible. As soon as your child is able, help them learn how to introduce themself and be able to ask other children, "What's your name?"

While toddlers and young children typically become friends more through physical activities than language interaction, they may be wary of approaching your child to play. Help your child learn how to initiate contact with other children by role modeling and practicing often. By preparing your child, they will become comfortable making new friends and may have more success than if they waited for someone else to initiate contact. This is an important skill that will serve them well throughout their lifetime.

4. Teach the child about their assistive devices.

When your child is able to understand, explain why they need and use the assistive devices they have. Whether it's hearing aids, a wheelchair, an FM listening system, etc., they should be able to describe what it is and what it does in simple language. Schedule a peer in-service the first week of each school year for their class and let the teacher know your child will be helping to lead it. Let them demonstrate the device(s) they use to their classmates. It is important to become comfortable educating others about what is a necessary part of their life. By participating in the demonstration, it removes the elephant in the room and allows them to set the tone for how they expect to be treated.

5. Discover the child's interests and cultivate them.

Introduce your child to a variety of activities and discover which ones they like. Help them develop their interests by signing them up for classes, joining clubs or participating in the activities as frequently as possible. This can be sports, music, dance, writing, photography, art, cooking, etc. Self-confidence soars when children learn a new skill or hobby they enjoy. They need the relaxation and downtime as well and both you and your child will be proud of their accomplishments.

6. Avoid labeling.

Do not use a child's disability as a descriptive term unless it is necessary to the discussion at hand. Remember, the child is a person first and should not be defined by their disability. It is offensive, damaging and can have long-term effects on their feelings of self-worth.

7. Teach the child self-acceptance.

Don't try to hide the cochlear implant, assistive listening device or other technology your child may use. Make these devices a natural part of their daily life. It is important for both their self-esteem as well as for their benefit. Sometimes people think they are protecting their children by covering up things that help them, but instead, children will often think that it is something to be ashamed of. This is not wise. A child who cannot accept their disability will be certain to encounter much more difficult obstacles as life goes on.

8. Acknowledge effort, not someone else's definition of success.

One of the best ways to boost your child's self-confidence is to acknowledge their academic, physical and social efforts no matter how small. By doing so, you are showing them that your love and approval is unconditional and not based on the outcome of their efforts. Motivation to try should not be inspired by the possibility of a reward from the parent or teacher. Offer praise, not money, gifts or special treatment, for both their efforts and their achievements. This way, they will not feel that they deserve praise or love only when they accomplish what they set out to do.

Children with disabilities often face many obstacles growing up. Early development of self-esteem, self-confidence and self-acceptance are instrumental to their success. Use these tips at home and share them with the educators and professionals who are part of your community. Together, you can ensure your child a bright and confident future.

Paula Rosenthal, J.D. (she/her) is deaf and uses cochlear implants to hear. Her husband and one of her three children also use cochlear implants. Paula is an award-winning advocate for people with hearing loss and their families. She blogs at PaulaRosenthal.com and is available for speaking engagements. To contact her, please send an email to thepaularosenthal@gmail.com.

Interested in this article for your publication? It is available for syndication.

Send an email to thepaularosenthal@gmail.com with your request

and put "Syndicated Inquiry" in the subject line.

No reprints without express permission of the author.

(Social shares are always welcome!)

5 Things to Teach Your Child with a Disability

Having a disability may make your child's educational journey and eventual path to employment bumpier than their peers, but it doesn't mean they cannot reach the same goals. Here are some of the lessons I taught my young daughter as she worked to overcome the obstacles thrown in her way due to her rapidly progressive hearing loss. These are the same things I learned as a child who also dealt with a significant hearing loss.

1. Teach your child to educate.

Give your child the words to explain their disability in age appropriate language. From the time I could talk, I told other children that I needed hearing aids to hear better just like some people needed eyeglasses to see better. By being open and neither ashamed nor embarrassed, it helped to put my classmates at ease. They didn't need to wonder, whisper or tease. My hearing aids were no longer foreign objects to them and they found it easier to accept me as I was. Children are curious by nature. Practice asking relevant questions with your child so they become comfortable fielding and answering them from their classmates and friends.

2. Teach your child to advocate.

Your child should understand that it is their responsibility to ensure that their needs are met. In school settings parents are not there and teachers may be busy or unaware of problems. Issues come up daily so it is best for your child to learn to recognize them and be prepared. Help them establish independence and to find their voice as young as possible. When they need to speak up for themselves they will have both the experience and the confidence to do so.

3. Teach your child to focus.

Children and adults alike pick up emotional and social clues with the use of visual and auditory cues such as facial expressions, body gestures, what people say and how they say it. Teach your child to be attentive and to face someone who is speaking and also that they should directly face people when they're speaking to them. Focusing is an important skill that is more easily learned at a young age and it will reap great rewards.

4. Teach your child the power of humor.

Humor is a wonderful tool, especially for a child with a disability. Growing up, I experienced many embarrassing and difficult situations, but I usually managed to find the humor in them. By not taking things too seriously I turned uncomfortable situations around, and in turn earned respect from my peers.

5. Teach your child that no one is perfect.

Many people don't have physical disabilities or visible problems, but their lives are far from perfect. Realizing this, I never pitied myself and I have always been open about my disability. It may not be easy, but your child has everything to gain by having a conversation about it early on. Typically, people are much more understanding and patient when they are aware that something is difficult for you to do. By exhibiting this kind of self-confidence, it also sets the tone for how people will view and react to your child.

While being a child with a disability is not easy, it is important for parents to teach them advocacy skills and coping strategies and also to instill self-confidence at a young age. By doing so, the roads of education, employment and relationships will be a lot smoother.

Paula Rosenthal, J.D. (she/her) is deaf and uses cochlear implants to hear. Her husband and one of her three children also use cochlear implants. Paula is an award-winning advocate for people with hearing loss and their families. She blogs at PaulaRosenthal.com and is available for speaking engagements. To contact her, please send an email to thepaularosenthal@gmail.com.

Interested in this article for your publication? It is available for syndication.

Send an email to thepaularosenthal@gmail.com with your request

and put "Syndicated Inquiry" in the subject line.

No reprints without express permission of the author.

(Social shares are always welcome!)