In So Many Words

1. How long since you have been with your dad? I saw him when he and his wife visited Pennsylvania in September 2006.

2. How many siblings share your dad? I have two younger brothers, both of whom are estranged from him.

3. Will you see your dad tomorrow? No, he is in Illinois and I am in Pennsylvania.

4. Do you give him gifts on Father’s Day? Yes, but they are always late. Seriously, I have a card and a explosion album with pictures of the Little Guy sitting on the kitchen table to be mailed out.

5. Have you ever had a tough time in your relationship with your father? Yes.

6. What was the last thing that you did with your dad? Went to Hersheypark and to Strasburg when he was here.

7. Growing up, was your dad tough on you? No, he was always tougher on my brothers.

8. Are you close to your father? We don’t have any hard feelings between us, but I wouldn’t say we are terribly close.

9. How long since you have spoke to him? The last time was in early April, when my grandmother was in the hospital for a few days. I do plan to call him tomorrow though.

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Updated 4/21/08: This book by was recommended by Jenny for older elementary or middle school aged children. It incorporates a Christian perspective into the topic as well.

In Jesse’s Shoes by Beverly Lewis

Siblings of children (or adults) with a disability encounter specific challenges and demands from their unique position within the family. Here are some books and other resources designed to both express and address these issues:

Written by (or stories from) Siblings

• Sibling Stories: Reflections on Life with a Brother or Sister on the Autism Spectrum by Lynne Stern Feiges, Mary Jane Weiss, and Sandra L. Harris
• The Sibling Slam Book: What It’s Really Like To Have A Brother Or Sister With Special Needs by Don Meyer and David Gallagher
• Autism through a Sister’s Eyes by Eve B Band, Emily Hecht, Gary B Mesibov, and Sue Lynn Cotton
• All About My Brother by Sarah Peralta

Written to Siblings

• Siblings of Children With Autism: A Guide for Families (Topics in Autism) by Sandra L. Harris and Beth A., Ph.D. Glasberg
• What About Me? Growing Up with a Developmentally Disabled Sibling by Bryna Siegel and Stuart Silverstein
• Being the Other One: Growing Up with a Brother or Sister Who Has Special Needs by Kate Strohm
• Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autism by Fiona Bleach

Some Online Resources

• Autism Society of American: Sibling Issues – article by Sandra Harris Ph.D.
• Siblings Perspectives: Some Guidelines for Parents – article by Marci Wheeler M.S.W. on Access Autism
• Sibling Support Project – organization for supporting and connecting siblings of people with disabilities; also the home of SibShops, which are described as “opportunities for brothers and sisters of children with special health and developmental needs to obtain peer support and education within a recreational context.”

It is so easy to focus all of our attention and energies on our child or children with special needs and forget about taking care of ourselves and our relationships. Here are some resources for these areas:

Personal

• More Than a Mom: Living a Full And Balanced Life When Your Child Has Special Needs by Heather Fawcett and Amy Baskin
• Parent to Parent USA has programs in many states to provide emotional and informational support by connecting parents with special needs locally. I would encourage you to call if you would like to be connected with another parent or to sign up as a peer supporter if you have a couple of years under your belt as a special needs parent. You can specify how often you will be available and turn down any request if you are unable to fulfill it at that time.
• Many times a local support group is a good place to be refreshed, whether it is through special events, speakers on related topics, or simply the chance to connect with other parents who “get it” for a couple of hours. You may need to search these out, but it is worth checking for a local chapter of a national organization such as the Autism Society of America (ASA).

Marriage

• The divorce rate in families with an autistic child is commonly reported at around 80%. In the US, the National Autism Association has launched the Family First Fund, which is offering qualified grants to be used for local, face-to-face marriage counseling. Applications for the current grant period are due by June 15, 2008.
• Married with Special-Needs Children: A Couples’ Guide to Keeping Connected by Laura E. Marshak and Fran P. Prezant
• Strengthening Relationships: When Our Children Have Special Needs by Nicholas R M Martin

In researching this area, I found many more books dealing with siblings of children with disabilities than these topics, and I will follow up tomorrow with a separate list of those.

I don’t know about you, but the parenting books I was reading before my son was diagnosed with autism have pretty much gone by the wayside. Although much of it is good information, it is very hard to apply when your child’s development is at a different level in almost every area and when he doesn’t respond to typical strategies the way you would expect.

Here are some parenting resources specifically aimed at parents of special needs children:

• The Asperger Parent: How to Raise a Child with Asperger Syndrome and Maintain Your Sense of Humor by Jeffrey Cohen
• Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations by Judy Winter
• Building a Joyful Life With Your Child Who Has Special Needs by Nancy J. Whiteman and Linda Roan-Yager
• The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross W. Greene
• Parenting Your Complex Child: Become a Powerful Advocate for the Autistic, Down Syndrome, PDD, Bipolar, or Other Special-Needs Child by Peggy Lou Morgan

Whenever I see a book by a parent with a child (or children) on the autism spectrum, I am instantly drawn to it. I love the feeling of connection and the opportunity to learn from someone else’s experience, whether it is the initial questioning and diagnosis process, what therapies or treatments have been helpful, or how they fought the system to get appropriate educational services or medical care.

But the best part is sharing in the many victories, both big and small, in each situation – the children who are growing up and developing despite all the challenges placed in front of them and the parents who are learning more about themselves and what it means to be a good parent, and a good person, than they ever thought possible.

Here are some of the ones I have read so far:
A Real Boy by Christina Adams
Facing Autism by Lynn M. Hamilton
George and Sam by Charlotte Moore
Let Me Hear Your Voice by Catherine Maurice
Making Peace with Autism by Susan Senator
One Small Starfish by Anne Addison
The Boy Who Loved Windows by Patricia Stacey
Thorn in My Pocket by Eustacia Cutler

What stories have inspired you or helped you grow?