Xander and I signed up for an Early Childhood Family Education (ECFE) class in our School district called Family Connections. It is for families of children with special needs ages 0-Kindergarten. I didn’t even look at that class in the Community Ed book because I thought “Xander isn’t special needs.” At least not what I thought special needs was. We got a letter in the mail from our Early Childhood Special Education (ECSE) teachers encouraging us to sign up or they would have to cancel the class. I didn’t want that to happen for the others who signed up and could really use the support so we enrolled.
The experience has been so positive! I have been learning about myself, the “system” (why we get services from the school district and how they change as the child gets older) and other kids with special needs some who may even be classmates of Xander when they get to school age. This class is a wonderful and I hope they get enough people to keep it going for as long as they can.
I feel like we are different from some of the other families as our special needs started right from birth and may not necessarily continue as Xander grows up. Some families start services later for something that the child needs support for a longer period or even the rest of their life. And others that know from birth that they are dealing with special needs for a lifetime. It is definitely a mix and most have gone through similar medical experiences and the emotional ups and downs that come with special needs. Starting life in the NICU with help breathing, eating, keeping warm, etc. definitely qualifies as special needs!
Xander LOVES the class since all he has to do is PLAY! We all play together; kids, teachers & parents; for a half hour and then we separate and the parents meet with a parent teacher while the kids keep playing. We do circle time at the end where we sing songs together. It is in a fun (new different toys Xander doesn’t have at home) pre-school classroom with awesome teachers and helpers.
At the first or second class we went over a diagram about the Stages of Adaption from Nancy Miller’s book, Nobody’s Perfect. I have found on the web they can also be called the Stages of Care-giving and the Stages of Acceptance. The four stages are Surviving, Searching, Settling-in & Separating.
- Surviving is what you do to keep going when you are feeling completely helpless. Surviving consists of coping: doing what has to be done and expending one’s energy to just get by.
- This is a time of acting, of moving forward from a reactive state of surviving. It is the beginning of a sense of control over emotions and your life; the awakening of a source of energy; a time for asking questions about the goals, values, and priorities of your own life. Outer Searching asks, “What’s wrong? Can it be fixed?” Inner Searching asks, “Why? Why him or her? Why me? Why us? What does this mean for me and for our lives?” Searching also involves seeking answers and interventions related to the illness or condition.
- This stage is seeing the world for what it is and seeing yourself for who you are. It is moving beyond the intense emotions of surviving, feeling less of the sense of urgency of searching, and gaining a greater sense of control and balance in your daily life. Settling In is a time of relative equilibrium: you may not ever “forget” the reality your precarious time, but it can become a time of deepening, and more precious, moments in the relationship.
- This final stage is a normal and necessary process in parent-child relationships. In a caregiving relationship, “letting go” by the caregiver may be especially difficult, with the caregiver unwilling, or unable, to experience any small separations, such as letting others help out in the caregiving and getting needed respite. However, it is necessary to avoid caregiver fatigue, and to allow the needy family member to retain or attain some level of independence.
The four stages are part of a normal process of adaptation. By understanding how they work, caregivers can better predict their emotions and reactions, and not think they are somehow “failing” when they feel a sudden rush of uncomfortable feelings. The stages help us see how we grow through the crises and hard times of our lives. The struggles and challenges of caregiving present great sorrows at times, but also opportunities for personal growth and competence.
Nancy B. Miller, Ph.D., MSW, author of Nobody’s Perfect: Living and Growing with Children Who Have Special Needs. Paul Brookes Publishers, 1994.
This made SO MUCH SENSE! It dawned on me that I had been just surviving through much of the first 11 months of Xander’s life. I didn’t have the capacity to deal with much between caring for Xander & pumping not to mention trying to go back to work. My health suffered (I didn’t gain weight with my pregnancy but I gained about 30 pounds after with stress/anxiety eating and no exercise and my blood pressure is higher again due to the extra weight) and my relationship with my husband suffered as well. I wish I had seen this information earlier. Even if a preemie doesn’t end up being special needs later in life, I think preemie parents as caregivers need this information sooner than later to help them deal with their emotions and situation early on so they can recognize and adapt or get help.
In reality I cycled through each of the stages many times in the first year. Surviving the initial 5 days in the hospital along with Xander, then some heartbreaking separation when I had to go home and leave him at the hospital in the care of others. We settled into our NICU schedule for awhile until they said they wanted to transfer him and that set me to searching about the new NICU. We settled into the new NICU and after a few weeks were surviving again as he needed emergency care and a transfer back to the first NICU. There was searching and survival until he came home and survival as he came home and we attempted to find some settling in. Finally at 11 months I felt that I could start concentrating on my health along with caring for a preemie. It was the first time I didn’t feel in survival mode for the majority of the time. It is still a huge challenge for me to find that balance and I am continually searching.
On a happy note we have done some happy separating. Xander goes to daycare, has been babysat by family, Dad even took him up north for a weekend while I stayed home!
Click here for some tips for caregivers: http://caregiveraction.org/resources/ten-tips/