Challenges and Blessings: When There is More than One Child with a Disability
By: Tzivy Ross Reiter, LCSW-R
Published in Building Blocks, December, 2009
Caring for one child with a disability can create extraordinary stress for families. Caring for two or more children with disabilities can create challenges that may seem overwhelming.Â
Mrs. L. shared her story. âMy first child did not have developmental disabilities. My 2nd child did not develop in the normal way that my first child did, but my doctor kept telling me not to compare my children. Yet I knew she was different. At 18 months, she was diagnosed with autism. âMy 3rd child did not eat right, choked on his own food, developed some speech but then lost it. He was evaluated at 4 months. The professionals took me more seriously this time because he already had a sibling with autism. He received Early Intervention but wasnât officially diagnosed with autism until 15 months.Â
âBy the time he was diagnosed with autism, I was already expecting my 4th child. I was consumed with fear my entire pregnancy, that something would be wrong with this child as well. This fear and anxiety created a lot of distance between my husband and I. At 12 months, my 4th child was diagnosed with an autism spectrum disorder.
âMy life completely changed with each childâs diagnosis. When this happens, your dreams for your child die. You have to live for the moment. Ultimately, you have to create new and different dreams for your child and for yourself.â
Special Issues for Families
There are many agencies that find themselves serving families who have more than one child diagnosed with a disability. These families have unique needs that must be acknowledged and addressed including:Â
Extraordinary Financial and Emotional Stress
The financial cost of special therapies, equipment, education and services of multiple children with disabilities can be overwhelming. The coordination of all of these services can be just as stressful.Â
Mrs. B describes her experiences in the following way: âItâs hard to balance yourself. This child needs something; that child needs something else, where do you begin? You have to deal with multiple service systems, different administrators, different therapists, different bus schedules, etc. Sometimes treatment or IEP meetings are scheduled at the same time at 2 different places, so you have to choose.Â
âEven something as basic as keeping track of their specific dietary needs can be overwhelming. One child can have milk and not wheat, and for another child it is the other way around. On top of keeping it straight for yourself, you have to make sure that their respective caregivers are aware of the differences.
âThere is a lot of guilt involved, child, because each child needs so much. Sometimes you feel like you just want to shut down.â
Relationship and Family StressÂ
âWhen my children were diagnosed, I mobilized and went into fix-it mode. My husband was devastated and withdrew. We had different coping styles, which made it difficult for us to support each other. Other family members, attempting to be helpful, would repeat all the negative stories about autism they ever heard.
âThere was some very painful discussion about âwhose side caused itâ after our 2nd child was diagnosed. We had genetic testing done. They didnât find anything; there was no family history of it. We then tried to move away from the topic, because it just wasnât productive for anyone.âÂ
Family stress can be compounded if one partner feels that the caregiving responsibilities fall disproportionately to him/her, or if the partners disagree about whether or not to have more children. The findings of genetic counseling can sometimes produce more stress on the family.Â
Mourning the Loss of Dreams
Mrs. W. has 2 children with developmental disabilities. She mourns the family that she always dreamed of. âIt is definitely a loss. You have to come to terms with what you will never have, and come to accept and embrace what you have been given. It is a process. âThis is not something you would have chosen. You have to give yourself permission to grieve.â
Intrusion by Others
Due to the public knowledge of their situation, parents of multiple children with disabilities can at times be subject to the inquisitive or hurtful comments of others. When her 2nd child was diagnosed with a disability, a family member told Mrs. W., âI told you that you shouldnât have gotten those vaccines.â
Friends who are not in this situation donât always know what to say or do to be helpful, and may at times even avoid contact with the family. The feelings of loneliness that can develop are compounded by the sense that no one around them truly âgets it.â Even families that have one child with a disability canât begin to understand their life.
As one mother put it, âThere are people who have one child with a disability who might suggest, âyou should try this approach or that treatment.â They donât understand that with 3 kids, you just canât do all that. You canât even afford all those things.â
Parents of multiple children with disabilities may harbor secret feelings of shame or inadequacy. Mrs. W. admits, âYou feel like you are damaged goods because you canât even produce a healthy child.âThey may experience periods of anxiety and depression, which require professional assistance.Â
If parents also have typically developing children, they may feel great anxiety that their shidduch prospects may be affected by the diagnosis of their siblings.Â
Accepting the GiftÂ
Many parents acknowledged an ongoing struggle in focusing on the positive aspects of their situation, and the gift in the children that they have been given. âI have learned so much from my children: to have patience, to slow down and find the joy in the moment. My children have taught me to be sensitive to people who are different, but no less feeling, than we are.â
Mrs. W. agreed: âI did not choose this, it chose me. But I was chosen for a reason. I would not be the person I am today if I was not the mother to these children. They have truly made me into a better person. I would not have known that I could even be that person if not for them.âÂ
While she still admits to painful periods, especially âat milestone events like starting a new school year or thinking about an upcoming bar mitzvah, I do feel that I was uniquely chosen to nurture my children and bring out their potential. They have disabilities, but they can accomplish, they can contribute, and I am helping them do that.âÂ
Ultimately, despite the challenges of caring for multiple children with disabilities, most parents are able to accept their children for who they are and create a new and still rewarding vision of their family life.Â
How Agencies and Community Members Can HelpÂ
Try to connect families who have more than one child with a disability with other families like them. Mrs. L. notes, âThe rest of the family needs so much help. Service agencies tend to emphasize the needs of the individual, but they must recognize how this affects the rest of the family as well.âÂ
Try to create programs for parents, fathers, grandparents and siblings. Fathers in particular would benefit from more support because their needs are often overlooked. If you strengthen the father, it helps to strengthen the marriage and the entire family unit. Advocate aggressively for them and access as many services as you can on their behalf Give as much respite as possible. As one parent put it, âJust getting out of the house is an impossibility. Finding appropriate babysitting for one special needs child is difficult, and for more than one special needs child itâs just plain impossible.âÂ
Try to anticipate needs and help them plan accordingly. Arranging babysitting, either through a volunteer or respite provider can make all the difference in parents of multiple children being able to attend supportive events or programs.Â
Be flexible, and make exceptions to policy, when possible, when working with families who have multiple children with disabilities. One agency conducting the psychological evaluation for such a family to help their children become eligible for services agreed to make a house visit rather than requiring that the children be brought into the office.Â
Resist the urge to rescue them or take over. Empower the family to make choices that affect their own lives. Try to find the common ground. Mrs. L. believes that âIf I had 3 typical children and only 1 child with disabilities, my life would be so much easier. But this is what I was given. When I see other families who struggle with only one child with a disability, I think that my issues with my 3 kids can be as big for someone who has only 1. I try not to be judgmental, and I wouldnât want people to be that way toward me.âÂ
Mrs. W. shares: âI would want people be open, and not make assumptions about me or my family. I may have a lot of challenges, but there are also blessings in my life.â A life that looks different feels different and is lived differently than many friends and neighbors, yet is still a life filled with meaning, joy and accomplishment.
Tzivy Ross Reiter, LCSW-R, has written extensively about issues related to mental health and developmental disabilities. She is Assistant Director at Ohel Bais Ezra. She is also an advisor to Building Blocks Magazine. OHEL Bais Ezra is a division of OHEL Childrenâs Home and Family Services. From the early to senior years, OHEL Bais Ezra provides a range of residential and community-based habilitation services for children and adults with developmental disabilities. For more information, please call 1800-603-OHEL or visit www.ohelfamily.orgÂ