The Predicament of the Parent/Caretaker

By

Parents can be successful caretakers for a child with a disability if they can step back from the family situation, take inventory, take time to grieve, take time to receive respite, work on relationships with other family members and finally, be willing to adjust their parenting to address the child’s developmental needs. The ultimate goal of the parent/caretaker should be the same as it is for parents raising typical children. To instill in their child a good sense of self-esteem, the ability to set and reach goals for themselves, the life-skills to be as independent as possible, and the opportunity to be independent thinkers and eventually, self-advocates.

Take inventory.

Taking inventory is the first step towards making sure that parent/caretakers address the child’s emotional development and not just the child’s physical needs. It is very easy for the parent/caretaker to get so engrossed in the daily details of the child’s special needs (be they physical, educational, or behavioral) that it becomes a list of chores to be done. This then can lead to parent/caretaker burnout, resentment between spouses, sibling alienation, and an underlying (but unspoken) attitude that loving this child is burdensome. You are not a horrible parent if this happens to you, after all, we are not "trained" in how to be parents of a child with special needs. The following inventory will help address these issues as we answer four questions: Have the parents adequately ‘grieved’ their loss? Do the parents receive respite services? Do we neglect our marriage or our other children? Finally, do we look for opportunities for our child with special needs to be a typical kid?

Take time to grieve.

Finding out your child has a disability is always a shock, regardless whether you find out in the delivery room, the emergency room, or in the psychiatrist’s office. The emotional impact of the "loss" of your child’s ability to accomplish typical activities will naturally lead you to grieve. In grieving this loss we experience five basic emotions, at different times, for different lengths of time, and at varying intensities. None of these emotions are rational, nor are they supposed to be. They are our emotional padding to help us sustain the shock of the news of the child’s disabling condition. You may experience denial, guilt, bargaining, anger, and finally, acceptance. If for instance your husband blames himself because your daughter has ADD and she inherited it from him (he has ADHD), you can be more supportive if you understand that he is experiencing the guilt that comes with grieving. You don’t rationalize and try to convince him not to blame himself, you allow him his feelings which can then open the door to his tears, thereby bringing his emotions full circle which will allow him to heal. Of course, you shouldn’t blame him because he has done nothing wrong.

Take time to receive respite.

The caretaking of a child with special needs, especially one, who is medically fragile, is physically exhausting, emotionally taxing, and spiritually challenging. The parent and child bond in more intimate ways and for a longer period of time. If a parent does not take time away from the child and lets the caretaking become the whole of their existence, they do so at the risk of losing an opportunity to reinforce the bond of marriage and strengthen the bond of parent to the other children in the family. The parent also looses their own identity that is imperative if the parent wants to nuture other relationships. The longer we are caretaking without regular breaks the harder it becomes for the child to begin to see the world through analytical eyes as independent thinkers and they will see the world through our eyes. They are near us when we are on the phone telling friends, "I am so exhausted," and they hear us when blow up in anger and even when we cry from frustration. The child may internalize the message that they are a burden to us, and eventually they may come to believe that they are a burden to society. Because of our selfless and loving role as caretakers, society will canonize us as saints and walk away. That is why we must give careful thought to expecting community support to help families of children with special needs to build adequate supports so that the family can successfully raise their child. Respite care is critical as a parent’s coping mechanism.

O.K. so now you’ve arranged for a few hours of respite. What to do? You will renew yourself or to a long-awaited recital and ice cream with your other child. Note the order of these suggestions. In an airplane emergency if the overhead oxygen masks drop, the cabin is losing air. Our first instinct is to put the mask on our child first, to protect them, but in fact the standard procedure is to place the oxygen mask on us first. You can survive only 3-4 minutes of oxygen and if you spend that time struggling to place an oxygen mask on a panicked and struggling child, you may not have enough time to then put the mask on yourself. So respite for yourself first and then build in time with your other family members.

Address the child’s developmental needs.

Once we have allowed ourselves to grieve the "loss" of our child’s abilities, we begin to access respite, recharge our batteries, and re-ignite the passion in our other relationships, we can begin to address the emotional development of our child with special needs.

Without these first three steps we run the risk of becoming overprotective parents and we teach the child in non-verbal ways that they are not capable of being independent and that without us they cannot succeed. The child will develop a low sense of confidence and self-esteem.

It is critical to understand that there will be a time when your child will ask, "Mom, why am I different," or "What’s wrong with me," or as my child asked, "Why am I disabled but I’m not handicapped?" When this time comes we should be done with our own grieving, gotten respite and other supports, and strengthened our bonds with other family members. Only then will we be ready to help them deal with their feelings of grief when we openly and lovingly discuss with them why they are "different." We need to help them deal with their anger, denial, guilt, bargaining, and finally acceptance. By doing this, will be helping to build emotionally centered children.

I have seen many wonderful books on how to raise a child with special needs. Often the books that I have relied on the most have been books that address the developmental needs of typical children. My child did not walk until the age of 3 but when he did start walking I read books on how to help toddlers to get around. It did not matter that he was developmentally delayed because all the hints that applied to a 9-month-old were helpful to us with our 36-month-old, leg braces and all. As my son entered his latter teen years he was suddenly stubborn and headstrong so I read books on how to deal with pre-teen children and they were very helpful. We must remember that our babies are children first and foremost.

Finally, we must look forward in our mind’s eye and begin to build for their future today. If we want our child to live normally in a community we must participate in that community with our child on a regular basis so that the child acclimates to the community and the community acclimates to the child. Regardless of our child’s special needs, the stares and comments they may receive, and whether others pity us or grant us sainthood. We must be "in your face" proud of our children just the way they are. When community members become friends and acquaintances, they can see our children without their disability therefore; making it will be easier to open the doors to things like, Boy Scouts, serving in church, etc. By letting our child experience community activities early in life, we build the foundation for them when they become a teenager and wants to have a volunteer experience or a part time job, which can then lead to… you get the picture.