The Balancing Act: Not Always a Game of Equality

Most families with more than one child struggle to maintain a balance of attention, love, and material possessions between their children.  They search for the best way to keep things fair and just.  Sometimes this is very difficult.  When one of the children has special needs the task is even more challenging.  To date I believe I struggle most with balancing the needs of both my children.  Visions of scales come to mind with me in the middle trying in vain to balance the heavy load without spilling or shorting one side.

Without a doubt Nadiya’s needs are greater than any typical, healthy child.  She requires assistance for every action and detail in her life from placing a toy on her tray so that she can play to feeding, dressing, and toileting her.  In addition she requires many therapies and specialty doctor visits.  Her health is complicated by her low tone and her seizure disorder so she is frequently sick.  When she is sick the illness becomes much more complicated than any of her sister’s illnesses.

This does not excuse me from my obligations to Anastasiya. She needs to have activities like her dance and musical theater classes. She must have her education monitored and her educational needs met. Socially I must make sure that Anastasiya has typical friends her age just as I make sure Nadiya is included. It is easy to neglect one child over the other especially when one has much greater needs.

Anastasiya assists in therapy circa summer 2006

I still struggle for the answer to this dilemma. Early on when Anastasiya was small we did art projects when Nadiya was napping. It was a creative outlet that was reserved especially for Anastasiya. During those years with Early Intervention we allowed Anastasiya to participate in Nadiya’s therapies. Sometimes we even had her assist. We also made sure Anastasiya had the therapy and support she needed early on. 

There are a lot of services available for siblings of disabled children. Many Early Intervention programs provide play therapy for the siblings. A social worker interacts one on one with the sibling in a play environment in the family’s home. This benefited Anastasiya a great deal. Depending upon your insurance coverage private therapy is often covered for children in this circumstance. Be sure to research the therapists. Make sure they work with children and have experience with play therapy. Make sure that they will work with you as well to provide techniques and strategies for helping your child cope with their sibling’s disabilities. In addition, you can also look into what your child’s school will provide as far as support. Will the guidance counselor work with your child?  Does the school have a support group for children dealing with death, divorce, or illness in the family? Churches sometimes provide this same type of support; check with your religious organization. There are also sibshops offered in the community where siblings of disabled children get together in a structured environment and talk about the good and bad aspects of having a sibling with special needs. They are able to meet other siblings like themselves and participate in fun activities as well. This can be a great support.

 We do these things for Anastasiya but there are still times where I feel I am being dragged in every direction. I feel insecure about how well I am meeting the needs of both children. Then a sense of calm comes over me and I can clearly see the reality of it all.

My situation is not that of a normal family. No matter what I do to construct a "normal” set and enact a "normal" script there will be deviation. There must be. What is good for one is not necessarily good for all. My grandmother was always so concerned about my sister and I having equal parts.  Whether it was a toy, a snack, or playtime with her it was equal. What she did for one she did for the other. The older we got the more challenging this became because what my sister got I didn’t necessarily want! I know her intentions were good but we were not always treated as  individuals because of this but more like an equal team. This didn’t always work for my sister and I and it certainly does not work for Anastasiya and Nadiya.

I am learning that with a unique and challenging situation comes the need for out of the box creative thinking. Problems are not always solved by traditional means and ideas. Case in point, two weeks ago my husband, David, and I found ourselves in a quandary. We had set up a conference with Anastasiya’s team of teachers to discuss some concerns with grades. David had taken the day to work at home, Nadiya would still be in school, and my friend would be taking Anastasiya during the after school conference time. 

This was a great plan…a "normal" plan. Well as our life goes the situation did not stay “normal”. Nadiya got pneumonia which complicated every aspect of my week. Her care was intense during this illness. Still my friend felt she could handle a sick Nadiya as well as the carpool kids. Then the day before the conference her younger son developed a high fever and was seen by a doctor. He was diagnosed with bronchitis which he immediately started treatment for. Now what were we going to do? To reschedule the conference would have been difficult but it seemed we had no choice. I was frustrated that Anastasiya’s needs would suffer yet again. It was then that I realized there are often many choices in life. They just may not be very conventional but they can work.

My friend supervising the sick van and the well van

My friend and I came up with an unusual solution. We each have a van. Why not have a sick van and a well van? The sick kids with similar illnesses that they were being treated for would be in one van. The older, well siblings would be in the well van and would be germ free. My friend would be in the middle supervising all four kids. Where now she  seemed represent the scale with the person balancing in the center, it worked. Maybe sometimes things are just that way. Everyone’s needs were met that day. My friend had a great sense of humor about it  creating signs for the van labeling them sick and well. She even brought a lawn chair to sit comfortable in the center.

Dressing them in the same outfit doesn't mean they are the same.

There will be times when I do not feel over extended and there is a natural harmony or ebb and flow. Then there will be difficult times where balance seems like a foul word. Children are different. As long as you are meeting their needs reasonably as they come everything will be fine.  There won’t be an equality that you can measure. Anastasiya will have her dance, musical theater, and ice skating. She will share music with me and the love of literature and writing. I will encourage her education and provide a structured and secure life for her as best I can. Nadiya will have her daily cares met. I will oversee her healthcare and her therapy. She will get all of the services she in entitled to under the law and I will protect her from discrimination and cruelty. Both children will get their basic needs met. They will have family time and friend time. They will both be loved by two parents who work very hard for them but they will not be the same. Sometimes Anastasiya may need to be disciplined where Nadiya needs to be comforted. Anastasiya may be encouraged to participate in an adventure outside her comfort zone where Nadiya may need to be sheltered. Nadiya may have to be content listening while Anastasiya and I sing in harmony. Both children may have to wait to have their needs met while I meet my own or those of my husband. It is an impromptu dance without choreography to guide us. As long as I am addressing the needs of both of my children in ways uniquely suited to them, I am doing what is best for them. Their needs will change and my methods will too. I must always open my mind to the unconventional, alternative solutions because sometimes those are the best choice for uncertain and irregular situations.