How do parents of a child with a diagnosis of Autism Spectrum Disorder/Aspergers find balance in their lives? Balance is a tough goal even for folks who aren't living with a child with a diagnosis of a developmental disability: there's balance between the personal and professional; balance between the public and private; and balance between the practical and the romantic. There are things that make an Autism Spectrum Disorder/Aspergers diagnosis even more challenging. Parents often have difficulty finding balance because of the specialized nature of the tasks involved in caring for a child with "special needs."
Someone in the family has to take charge of all of the specialized tasks. That duty can be shared, but that's often difficult logistically. Someone has to know all of the services that are needed, all the latest offerings of the therapeutic, educational and medical communities. Someone has to be the social facilitator for a child that is fundamentally socially disabled. Someone has to attend all the therapies, all the meetings, all "social facilitation required" play dates, and on and on.
There also has to be someone who brings in the income that pays for all of the interventions and beyond. Sometimes both parents can work, but both parents working can lead to a situation where no one's available to manage all the tasks necessary for the child diagnosed with Autism Spectrum Disorder/Aspergers. Of course this can be a Catch-22. If both parents are trying to maintain all of the necessities of the demanding Autism Spectrum Disorder/Aspergers workload, then there isn't money to pay for everything. The strain of just these two functions is enormous, and we haven't even started to talk about all of the additional work/play that's necessary to have a balanced individual and family life.
Finding the therapies, managing school and social engagements, finding entitlements, dealing with insurance companies, all take a full-time, even "obsessive" effort as Suze Lessing puts it. That doesn't take into account just trying to "reach" your child who is lost in his or her own world of autism.
I remember when our son Frankie, who has been diagnosed with Autism, was four years old and a friend from our days as DINKs (Dual Income No Kids) came to visit our small-town life from glamorous San Francisco. After spending a day with us and our two children - including Frankie - he turned to me and said, "Does every moment have to be a 'teaching moment'?" I thought for a second and then replied, "Well, yeah, I guess it does." Our lives were consumed with engaging and habilitating Frankie in addition to everything else that had to be done.
Employment brought on its own special stress. Like Adam, I couldn't lose my job, because not only would we not have income, but our insurance would disappear. We had to have the income because the specialty schools, therapies, and in-home services that were essential for Frankie's habilitation cost well above any reimbursements we were receiving.
Balance is a worthy goal and something I think we all strive for, but often we have to be content with just the striving. Sometimes the striving itself becomes something of a balance. What's important is to be aware of the lack of balance and try to achieve it as much as possible. Many times this will require asking the assistance of others - be they family, friends or professionals. As families living on the spectrum, we have to remember to ask for that balancing support.
Written by: Roy Sanders