Ages & Stages

Sharing thoughts from within families of children with disabilities....by Joani Gent, freelance writer

Having a child with a disability requires parents to adjust to a new set of expectations on how it feels to be a "father" or "mother."

"My child with autism is only able to respond to affection on her terms, so those rare moments when she actually makes full eye contact and puts her arms around my neck and giggles in my ear are the moments that define being a dad for me." -- Jerry

Although often not acknowledged, parents must grieve for the child they expected and lost, to be able to fully accept and love the child they have.

"I feel the gamut of emotions over and over again even after eleven years... guilt, anger, sadness... I have learned that facing those feelings and accepting that they are normal is half the battle. The next step then is to not become bitter, but to become better because of the experience" - Steve

Parents of kids with disabilities have an added stress on their own relationship - added demands of medical needs, behavior issues, education requirements, legislative advocacy -- all requiring time and effort. As in all parenting relationships, one of the best gifts to a child is the stability of their parent's relationship.

"Once we learned to navigate the system enough to establish supports like respite, we were able to once again focus on our relationship needs. It was almost like starting over." - Sue

Finding support for their challenging role of parent is not always easy, but needed.

" I don't think men look for support for themselves too often. They tend to want to 'fix' things and when they can't 'fix' it their emotions stay bottled up. My husband doesn't talk much and I know he doesn't talk to other men if he is feeling low or has questions about something, but I do think that he feels a connection to other dads of kids with disabilities. And indirectly he gets support knowing them." - Lisa

Most fathers did not choose to have a child with disabilities, nor did they train or prepare for the role. By living it though, they are given the opportunity to learn lessons they otherwise might have missed.

"I have learned that every child has special gifts and talents, and that some are harder to discover in a child with disabilities, but once they are 'brought to the surface', it is amazing what the child can accomplish." - Jon

All children need one-on-one time with parents.

"We have a great time when we do things together. When it is just us, a very different dynamic emerges between us when I have to focus just on her. I feel a special bond with her, and it has to do with her sense of humor and with me talking to her about how she sees the world - surprising insights!" -- Michael

Men who father more than one child must balance the higher level of demands of their sons or daughters with special medical or developmental needs with the needs of their other children. It is important for parents to continually access level of responsibilities in a family and to encourage siblings to express their feelings.

"Sometimes I wish I wasn't in this family. I have to do so much for my sister, and sometimes it feels like I don't get anything back... kind of like if you went to a birthday party and gave someone a gift but they did not give you a goody bag or even send you a thank you note". - a 6-year old sister

Fathers often take on a stronger play mate role than care giver, whether their child has disabilities or not.

"Early on, Marty took on more of a 'I will be your buddy' role. He has always used 'voices' to help the kids have fun or get through things that they found hard. You have not lived until the voice of Julia Child helps wash your hair or Curly from the Three Stooges gets you to take your awful tasting medicine." - Kim

Fathers of kids with disabilities are like any other dads -- filled with dreams of their child's future. When one parents a child with a disability, the dreams must get redefined.

"One of the most difficult parts is sadness - when I wonder about her chances for the future... I want her to someday lead a happy and independent life, and I worry that she will be saddened when she becomes fully aware of her own limitations." - Michael

Links
Resources for families with children with disabilities:
http://www.fathersnetwork.org/

Our mission is to celebrate and support fathers and families raising children with special health care needs and developmental disabilities.
http://www.thearc.org/

The Arc of the United States is the nation's leading national organization on mental retardation. The Arc represents over seven million children and adults with mental retardation and their families. The Arc has over 140,000 members within approximately 1,000 state and local chapters nationwide.
http://www.NICHCY.org/

The National Information Center for Children and Youth with Disabilities. NICHCY is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals. Our special focus is children and youth (birth to age 22).

Quality Time, Quality Books

Children learn language skills and enjoy learning to read when fathers use animated language during reading times. Dads and kids can create this quality time at bedtimes, waiting in the car, after supper.

I Love My Daddy Because...
By Laurel Porter-Gaylord, New York: Dutton Children's Books, 1991

This book explores not only the human/parent/child relationship but also the animal/parent/child relationship. All of the animal daddies help their children in a similar manner that human daddies help their children. The common bond of love is exhibited in all parent/child relationships. Many science/nature connections can be made using this book.

Me & My Dad activities
Take your child, this book and:

• Go to a local petting zoo, city zoo, or pet store.
• Take a drive in the countryside.
• Go for a hike in a nature area.
• Identify the many different animals you observe.
• Discuss how the animals care for their young and how you, the child's father, exhibit similar characteristics.
• Ask your child about the animals' different habitats. What are the differences and the similarities between your home or habitat and an animal's habitat?
• Do all these animals live in the jungle, the forest, the ocean, and the river?

Got a fourth grader at home that likes to watch TV?
Reading together can be a highlight for both a child and parent. When children reach fourth grade, many parents assume the child can read so they rarely read together. Educators recommend taking time to read a few pages or a chapter together as often as possible. Check your local library for these recommended books:

Blume, Judy, Freckle Juice
Blume, Judy, Superfudge
Clearly, Beverly, Ramona the Pest
Conford, Molly, Hail, Hail Camp Timberwood
Dahl, Roald, James and the Giant Peach
Martin, Ann M., The Babysitters Club
Rockwell, Thomas, How to Eat Fried Worms
Silverstein, Shel, Where the Sidewalk Ends
Sobol, Donald, Encyclopedia Brown: Boy Detective
Warner, Gertrude, The Boxcar Children
Wilder, Laura Ingalls, Little House in the Big Woods

Source: Iowa State University Extension, Parenting Pipeline newsletter