Nine years ago, when I adopted a child with special needs from overseas, I spent months pouring over books and blogs. I prepared myself and my family for the challenges ahead, and I felt like I was ready to tackle my daughter’s medical and psychological issues head-on. The one issue I didn’t account for, however, was how my daughter’s special needs would one day affect her siblings.
Years later, her physical concerns have been remediated, but the psychological impact of early neglect continues to plague her. She has sensory issues, PTSD, and difficulty with self-control and regulation, just to name a few. My middle daughter, after watching the movie Wonder, paraphrased a line that perfectly describes our family life.
It’s like Lucy is the sun, Mom. The rest of us are just planets revolving around her.”
Her statement hit me hard because I know she speaks the truth.
Although her brother and sister love and protect Lucy, they often feel cast aside because we, her parents, have to spend a disproportionate amount of time handling her meltdowns and behaviors. There are many things we cannot do as a family because Lucy is mentally unable to handle it. There are many times, when, due to her rages, her siblings are unable to have friends over or make it to their sports practices, birthday parties, etc. Most days, Lucy demands most of our attention.
Her siblings are mature for their ages – because they have to be – but often resent Lucy’s emotional struggles. They also worry about their sister and they are sometimes embarrassed by her behavior. During a recent public meltdown on vacation (changes in routine are especially difficult for Lucy), her sister picked up a toy megaphone from a hotel gift store and started shouting into it. I hastily grabbed it out of her hand while simultaneously pushing her brother in the stroller and dragging her hysterical sister out of the shop. I questioned her behavior later in the evening when the big feelings had subsided, but I knew what her answer would be before I even asked.
I just want someone to hear ME for once, Mom.”
There is no doubt that managing a child with special needs takes its toll on parents. It’s easy, to forget, however, that siblings of special needs children often feel overlooked. I recently spoke at length with our children’s pediatrician and she gave me some wonderful strategies for helping and supporting siblings of children with special needs.
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- Make time for each child individually. I recently started waking up early one day a week to take my middle daughter to breakfast after we dropped her siblings off at camp/daycare. This uninterrupted time with just the two us has really helped her feel emotionally connected to me, and our conversations have helped her understand her important role within our family.
- Get therapy for the “typical” kids as well. Siblings of special needs children have been found to have a higher risk of developing emotional issues themselves. It is important to understand that they, too, may need professional help in dealing with the anxiety and stress of having a sibling with special needs.
- Give information freely. Although we keep their ages and maturity levels in mind, we try to be open and honest with our children about their sister’s challenges. We answer their questions about their sister’s diagnoses, and we make them aware when we are trying new medications or therapies. We also try to have open dialogue and not oversimplify or sugarcoat the difficulties their sister faces.
- Seek out support groups and/or networking. It is important for the siblings of special needs children to be aware that they are not the only ones experiencing this particular life challenge. They need to be able to talk and connect with other children who have “been there.” Support groups are a great way for siblings of children with special needs to discuss feelings, concerns, and make new friends. Cincinnati Children’s Hospital also has Child Life Specialists available who assist siblings in coping and offer support.
- Thank them. It can be very easy to take typically-developing children for granted, but putting up with siblings with special needs is never easy. Make sure your other children know they are loved and appreciated. Thank them often for their kindness, patience, and help.
The silver lining in our particular family situation is that our other children have developed into bright, accomplished people with wonderful coping skills. They are patient, empathetic, and compassionate. They are not afraid to talk about mental illness and they are not afraid to ask for help. They are always willing to help others and understand the differences amongst people in their peer groups.
We are on a long road and the road ahead is even longer. We believe that by following the steps above, all of our children will feel loved and appreciated and know the special role they play in our unique family.
Do you have a child with special needs? What challenges have you experienced as part of your parenting journey?
