There is no amount of money in the world that can buy us more time. Nor is there a holier than thou prayer that can make more time miraculously appear. Twenty-four hours is all we get. Parents do their best to balance, juggle, and manage their time demands in a way that is healthy and productive for their family. They use the skills and resources they have available. However, parents of children with special needs cannot always rely on the skills and resources they have to keep their families moving forward. Many of these parents require more skills, resources, and support than parents of typical developing children.
Prior to our daughter's diagnosis, parental care giving demands were typical for my husband and I. We participated in social gatherings that were appropriate for an infant or a toddler. We praised our daughter's numerous developmental milestones. Our time demands, during this period of our life, did not center around our daughter. I decided to go back to school to pursue another degree while I cared for her at home. My husband worked full-time and went to college full-time. We were concerned about many of the same things as other families after having a baby. And just like many other families, we kept ourselves motivated by continually looking ahead and seeing only success. We had long, drawn out discussions about the condition of the world, our daughter's education, our business ventures, where we would eventually live, and when we would have another child. Then one day an early child intervention (ECI) specialist told us she believed our daughter was autistic.
After we received a clinical diagnosis, all time demands centered around our daughter. We did not spend one more second discussing anything relating to "the future". Our perception of reality immediately scrolled in from the wide world of known and attainable possibilities to a vast world of inconceivable unknowns. We became obsessively focused on our little girl. We lost all sense of time, separated from community and culture, and quickly realized that our society was not set up to understand our autistic daughter and all her needs. Our understanding, training, and education on "how to survive in this world's system" slowly became worthless. We were not prepared to dive into this huge pool of knowledge containing "what-ifs, how do I do that, where do I go from here", but we did.
Support
Numerous studies reveal the benefits of social support. However, after my daughter's diagnosis, I was in no condition to "socialize" even in a parent support setting. I was too overwhelmed to participate in support meetings, respites, and other social interactions. I was focused on the constant barrage of therapy appointments, managing severe behaviors, homeschooling, and helping my daughter overcome language & communication issues. I felt alone, isolated, and worried all the time.
In hindsight, I wish I would have participated in support meetings and respites during my daughter's early years. Why? Because I desperately needed resources, emotional support, and direction. Support meetings and respite provide these as well as genuine encouragement, new ideas, strategies, and a sense of "I am not alone." Furthermore, support meetings and respites strengthen us, re-balance our minds, and gives us room to breathe. This is important, because we are the active agents in our child and family's lives. We are the ones laying down the foundation upon which they can build and grow. We must take care of ourselves in order to effectively care for our children and family.
Researchers have shown child early intervention (EI) strategies are most effective when the caregiver's emotional state is stable. Additionally, researchers have also shown that when parents are stressed and exhausted, there is an increase in problem child behaviors in our children.
Support meetings are available all over the city of Houston and in surrounding areas. Check the HARS calendar for one near you.
Raising and properly caring for a child with special needs requires support. No matter how strong and durable you think you are, having a support network will only make you stronger. Over the past twenty years, children diagnosed with autism (and other developmental disabilities) have been the center of intervention, treatment, and etiology studies. Less attention has been focused on the caregivers that spend the most time with these children. Now that treatment protocols, intervention strategies, and causal debates have risen up and steadied out, it is time for more attention to be placed on the emotional well-being of caregivers.
I have been hosting a parent support group for three years. After all this time, there are certain issues that continually come to the surface. The most concerning issue is the feeling of social isolation and the cyclical thought of "I live in a world of my own".
Challenging child behaviors and social interaction difficulties have been implicated as two of the main factors why some parents feel separated from society, family, and friends. These behaviors and other symptomatic expressions take a lot of time and energy to manage. Many times, caregivers are just simply too tired to engage in social outings, store shopping, or going to church, which leaves them feeling isolated.
Compounding this feeling of isolation is the fact that many caregivers are so exhausted after their day-to-day tasks and responsibilities, they do not have the energy or the drive to participate in respites. Many of the caregivers I talk to also struggle to get out of the house to attend parent support meetings. That is why it has been my mission to continue our parent support meetings even when only a few people are coming. Why? Because I KNOW what it takes to get yourself together enough to show up at a social gathering. If one person makes it out, then that meeting was set up for that one person. Furthermore, it not only benefits that one person, it also benefits their family.
This is why support is vital for survival. Support in the form of respites or "caregiver breaks" provide caregivers with time to regain their stamina and allow their mind and body a moment to rejuvenate. Respites allow caregivers a moment to think about their children, their family, and themselves. Support meetings are usually in a small setting around a table with parents in similar situations. They allow us a place to listen or talk to other people that are usually very willing to provide direction, resources, and emotional support.
