I find it interesting that people associate the stages of special needs parenting with the same steps of those who are grieving a loss. Yes, I can see how there is a similarity. But, I also see big differences.
In death there is finality. When parenting a special needs child, there is movement, change and then a realization that I doubt compares to the acceptance of grieving the loss of a loved one.
When thinking about the process of parenting Mel. I see patterns of movements, of thought or stages. I have seen similar developmental levels in the families of those I educate. I think of it as a family moving, transitioning from place to place. I see the parent moving in and out of thought patterns. I think these patterns of thought are like platform for policy making vs stages of development.
A platform is a supporting surface. It could be defined as a moment in time in which a way of thinking molds decisions and plans of care. The more the medical (educational) community understands how a parent is thinking the more beneficial the relationship. As a parent, I moved on and off different platforms many times over the course of my Mel’s life. As an educator, I see how the parenting, plan of care can be driven by a parent’s ideations.
Platform – Denial
The first stage or platform I want to mention is denial. This platform is unfortunately often confused with the platform of hope. There is a difference. A parent in denial is a parent not moving forward. A parent stuck. A parent in hope is a parent that is seeking answers and trying to navigate a confusing world. The parent in hope is a parent attempting to make a difference in their child’s life. The parent in denial is avoiding reality.
Example Denial — I had a neighbor in denial. Stacy stayed home, avoided her friends and family. When I did see her out, the child was always in a stroller and only her beautiful eyes shown over the edges of the cover. When support or services were brought up, the subject quickly changed. She shunned any and all situations that pointed out her child was struggling to develop. Stacy talked about how Janice was doing this or that. I could see how the child sort of completed those developmental milestones but in reality the child was using tone and reflexes to interact. Stacy needed to grieve, she needed someone to gently assist her, to nudge and comfort her as she transitioned.
Denial is a critical stage for support personal. The child needs intervention and if the parent is pushed too hard, he/she may run. However, doing nothing helps no one. The parent in denial needs help moving to the next level. They need honesty yet understanding. Providing intervention means navigating a complex physiological dilemma.
Platform – Anger
I have been on this platform many, many times. I have also been on the receiving end of this platform.
I recall sitting at a special needs event and wanting to scream at the organizers. They had organized a special performance in the middle of a Christmas party. The performance, a dance recital by four and five year olds. Really, I wanted to scream; my child will never dance, will never walk and here you are shoving it in my face.
I recall getting very, very angry with medical professionals who would not do as I wanted or were reporting data I refused to hear. I was angry at the circumstances that brought me to where I was. I was angry I had to be at that location, at that time. I was angry that a stupid disorder was ruining my life or the life of my child. My thoughts were not rational.
When I am at this stage, I need space. I need to think. I need medical professionals to just nod and call me back, later. If they pushed, I only pushed harder. This is why educational meetings have the clear option to adjourn and complete the processes at a different time. Anger is a hard place for anyone to remain.
Platform – Depression
This is a platform parent’s move on and off of. It comes and goes. Depression is common for those parenting a special need child. It is also prevalent when a medical crisis occurs. During this stage, the parent is blaming themselves. They fault themselves and others.
When Mel was an infant, I recall hearing a Folic Acid commercial. I reviewed and reviewed my diet when I was pregnant with Mel. Did I cause this? Could I of prevented this? Why did the medical community not find out about Folic Acid before 1994?
Appointments may be missed during this time. Being organized and coordinating care, almost impossible. Movement is hard. Putting one foot in front of the other is hard. Talking about things is hard. Cheering up a parent in this stage is hard. Listening is key during this time. The parent is really not thinking, using common sense. The parent needs to talk. They need time to process the information and eventually, they realize they are not to blame. Some need medical help. Others just need time and support. Some need a kick in the pants. A reality check. What is needed and when is complicated and hard for all involved to figure out.
Platform – Bargaining/Searching
The parent in this stage is at high risk of being taken advantage of. When on this platform, parent buy into methods that are unrealistic. They will attempt things to cure their child even if it makes absolutely no sense. I had a mom fly her child to a third world county to get brain surgery. I have had parents spend their life savings on “treatments”.
Parents who are searching are caught up in the manta of, what if I do not try. What if I fail to try everything and a miss the cure? What if I do not act and my child therefor does not attain normal. Not trying at this stage is seen as giving up. The world preaches difference are not good. The world preaches one should give up everything so a child can reach their full potential. It seems everyone is screaming, “If you do not try everything, in ten years you will be full of regret”.
Not all parents lose touch with reality during this stage. Some are aggressively seeking services that are making a difference. They are enrolling their child in services to achieve goals. To make gains. They are learning what their child can and cannot do. As the parent navigates this platform, they learn the joys of parenting a child. They start to understand their child strengths and weaknesses. However, while in this stage, they still may not realistically understanding the depth of a disorder. Coming to grasp with the permanency of a disability is hard at this stage. Seeing the future is clouded by the attempts at attaining a cure.
Platform – Acceptance/Hope/Normalization
As the parent moves into acceptance, they start to see the future with hope. They are working with the medical team to move forward. They seek treatment. Parents are researching and asking questions about options. They look for interventions; but, are move selective than they were when bargaining. They seek data, clear goals. Parent participate in medical and educational plans of care when they understand how this or that will be beneficial. They want to see results.
Parents at this stage are seeking normalcy. They try to minimize the difference between their child and those without disabilities. They may actually want a decrease in service yet are fearful they are providing a disservice by not continuing.
At this stage, I wanted home programs and interventions that would truly make a lasting impact. I was not going to spend hours and hours doing this or that if I could not see a lasing benefit. I wanted time for Mel to be a kid. To have fun. I knew my child and wanted medical professional to listen to me before developing a plan.
This stage also includes the hope that many professionals and friends see as denial. The parent at this stage strives for progress. They hope. They hope that this or that makes a difference. Sometimes they stick their head in the sand and ignore the obvious. That is ok; as long as the head does not stay buried too long. Hope drives them forward. Parents need to have hope in order to keep up the pace of mixing normalcy with realization. Of mixing the extra support, with the job of parenting a child, any child. Hope keeps depression at bay. Hope helps parents see past the child’s weaknesses and into the future. This is a tricky stage for the medical team. The parent seeks for ways to help support the child and at times can seem unreasonable. The parent wants information, services and to see change. When progress is being made, all are content.
Example Hope — The parent of the 3rd grader who just learned their ABCs is asking for someone to work towards reading. Some professional would chatter behind closed doors that this parent was in denial. This child will never read. What is the purpose? In reality the goal of learning the ABCs always seemed to be out of reach to this parent. Attaining goals that were once unattainable can ignite a flame of hope. At this stage, the medical professional needs to balance the reality of the disorder with the knowledge that hope is a driving force in the family’s life. The parent knows the child’s weaknesses. The medical (educational) team needs to balance reality without extinguishing the flame of hope.
Platform – Self-Actualization
This platform is interesting as the child or teen may reach this stage before their parents.
I remember trying to convince Mel she needed therapy after a hospitalization. I was hoping for gains that were out of reach. Was the therapy needed, probably not? Did it make a difference? No. The extended hospitalization had thrown me into a depression and I was craving normalcy. I was fighting internally and the only tool I had was pushing Mel toward goals that were meaningful to me. Mel just wanted to get back to her life, her friends and her normal.
Self-actualization, is a psychological term that represents a person ability to integrate the real self with the ideal self. To come to terms with strengths and weaknesses. A special needs parent now sees the child from many angles. They see the child or young adult for who they are in relation to their surroundings. It involves respecting, accepting and allowing the individual to be who they are. It involves moving away from a disability focus.
On this platform the parent is ok with the realization that their child has different needs. The parent sees the child’s life as meaningful, purposeful, and beautiful just as they are. The disability have moved to the background and the child’s identify is not defined by their weaknesses.
When a family reaches self-actualization, parents see their child as a child who just happens to have a disorder. The disorder is part of them but does not define them. The disorder is not good, nor bad. The person is just that, a person or child who learns and grows and whose life has meaning. The disorder and challenges blend into the background. The child is supported and self-advocacy is taught. The family has found their own normal. And that normal is just right for that moment in time.