On one of the Coffee Klatch Tweetchats I moderated, my guests were Bobbi Sheahan and Dr. Kathy DeOrnellas, authors of What I Wish I’d Known About Raising a Child with Autism. Our topic was: Siblings of Children with Autism or Special Needs and what a lively discussion we had! Let me share our tweets with you. Remember the Twitter restriction of 140 characters. Twitter might not make it eloquent English but the ideas and advice are first rate. Let me tell you a bit about these remarkable ladies.
About Bobbi Sheahan
Bobbi Sheahan, an Assistant DA, left her legal career in 2003 to become a full-time mother and part-time writer. This is the third book for the mother of four. Her first two books, published by Texas Lawyer Press (a division of American Lawyer Media), are reference books for attorneys. She wrote this book about the first five years of her second child, Grace, who is autistic. Grace has been diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). Supported by her husband, Ben, an electrical engineer, her writings appear in Bookmarks magazine, Entrepreneur.com, and Thefreelibrary.com.
Dr. Kathy DeOrnellas is a licensed psychologist, who works in her private practice with children, adolescents, adults, and parents who are affected by autism (ASD). Dr. De Ornellas is Assistant Professor, Director of the Master’s in School Psychology Program at Texas Woman’s University where she conducts research in autism. Bobbi writes about meeting Dr. Kathy DeOrnellas for the first time as their psychologist: “She didn’t judge us, she didn’t insult us, and she amazed us… Before Dr. DeOrnellas became my co-author, she rescued my child from her silence and helped us learn how to reach her.”
Dr. DeOrnellas, tell us about your research study about what it’s like to grow up with a sibling who has autism.
We have been researching siblings of children with autism. Working with families, I came to see that siblings were being left out and were not always getting what they needed. I wanted to find out how they felt about that, so we launched a survey to find out.
Description of research activities 2/8/2013 taken from Texas Women University website: “Dr. DeOrnellas’s research focuses on individuals with Asperger’s disorder and high functioning autism. For the past three years, she and a team of students have collected data on the best practices for the psychological assessment of students with these developmental disorders. A number of theses, dissertations, poster presentations, and national conference presentations have been completed. In addition to working to publish the results of this research, Dr. DeOrnellas is now turning her focus to applying what has been learned to interventions with these children and adolescents, and their parents. Data will be continue to collected to determine the best practices for social, emotional, and behavioral interventions.”
How Are Siblings Affected by Children
with Autism or Special Needs?
Siblings are affected by any child who takes a lot of attention or time from parents. Some parents lose sight of the needs of their other children while trying to get help for the child with autism or special needs. It’s easy for the child whose needs aren’t as obvious to get a bit lost in the shuffle sometimes.
Siblings are especially affected if the child has embarrassing behaviors. And then the kids feel guilty for being embarrassed or put upon…it’s like a double edged sword for these kiddos. That’s why it’s important to be honest with your other kids about autism or other health or developmental needs from the beginning. Tell them at a level they can understand. It is important to address worries and fears of special needs siblings. For example, one child used to think her sister’s autism was contagious. Siblings of kids with special needs must have a chance to talk and be heard.
If you notice your child is not coping well with the situation and he is often angry, worried, jealous, and even depressed, it would be best to seek professional counseling to help him cope before these feelings disrupt his life and your family.
Parents also struggle with feeling guilty. If they take too much time for just one child then another child feels left out. It’s a crash course in treating kids as individuals, which we need to do anyway, but harder because children with special needs can consume almost all the time and resources.
Parents know it is important not to set up other kids for resentment and bitterness against their sibling, parents, and the whole situation. It’s easy to feel overwhelmed and incompetent. It is a delicate balancing act when you take each child’s personality, temperament and different abilities.
Lack of time is the first thing parents mention when asked how they are coping. Also lack of time for their own self-care is another. You can’t give what you don’t have; therefore this makes a support system even more critical.
How Can a Strong Support System Help?
Having a child/children with special needs causes us to rely on our community and support system for the other kids too, not just the child with high needs. Supportive friends and extended family are such a huge blessing. Parents often worry not to overtax them however. Parents have to get over their fear of asking for help from people they barely know. It is a great way to support these siblings.
How to Help Siblings Feel
Important, Loved, and Understood?
Try to take a few minutes every day to reconnect with each of your other children. Listen to them and let them talk. Ask them a lot of questions so they can reveal their feelings.
Most parents are doing the very best they can in a very difficult situation so we need to give them support and cut them some slack. It is challenging balancing everyone’s needs, dealing with schools, and not burning out. It’s also very helpful for the siblings to have friends who are similarly situated.
It is very important for siblings to have their own life, separate activities, not just ride along with the special needs child all the time. This is difficult to do in the early days, but it’s essential. It’s a challenge to parent multiple kids whose needs are very different from one another. Sometimes it is best for the children to do different activities or attend different events. Going in separate cars allows to arrive later or to leave earlier. This means Mom and Dad are out into different places and carpools, but that is how many families make it work. It is recommended for siblings to build support systems outside of home to help them get to activities when parents can’t take them.
There Is a Silver Lining:
Many Siblings Mature Into Amazing Youth
The upside of growing up with children with special health or developmental needs is that siblings are some of the most amazing, resilient people. They deserve our respect!
In college, in relationships, in life, they bring their wealth of experience gained by living in this different situation. Siblings become more patient, dependable, and kind; all traits that are sorely lacking in many of our youth. It makes them stronger and more compassionate than their peers because special needs siblings have had some experiences that can, as a generalization, help them to be more mature and emphatic. Empathy isn’t something we teach our kids once and forget about it. It is something you continually must remind them about and you hope will stay with them all their lives. They do grow up with a different perspective despite occasional anger and resentment that is to be expected.
Parents must be sure siblings don’t fall into the trap of being perpetual caretakers in relationships. They must not believe that they have to put themselves last all the time. This is an area where parents need to be good role models. Again, tough to do!
Yes, take care of yourself — and your marriage. You can’t support your family if you’re running on empty.
Respite care can be a life saver but most parents are very resistant to it – even when it’s a family member giving respite. It takes a lot of preparation and training to find a good respite care provider. Parents find it difficult to trust someone to care for their child. Parents feel guilty. Also they worry their child with special needs will be mistreated by someone who doesn’t understand them.
One solution is to have the respite worker/babysitter come into your home and be there with you. This way everyone gets used to the new person and the parent can actually get other work done but be close at hand to iron out problems. This great tactic gives you time to train how things should be done and observe the interaction and connection between both sides. It gives all a semi-break and gives the kids a great chance to get used to the babysitter before you leave him/her alone with your children.
Dr. DeOrnellas suggested checking with a local college. Her graduate students often provide respite care and this lis good experience for them, too.
The Friendship Circle offers teen buddies trained to offer one hour of respite a week.
Thanks to our guests, authors Bobbi Sheahan and Dr. Kathy DeOrnellas. Thanks to ALL who joined us! We appreciate your input! WOW a great tweetchat session!
- My Holly – A Story of a Brother’s Understanding and Acceptance – a children’s book