One area that I don't talk about a lot is the impact that raising two boys on the spectrum with one being severe does to the mothers health. I have always been a relatively healthy person. I had a major surgery at the age of 19 but other than that....I am healthy.
I have read several books written by autism families in a few of the books it has a parent battling cancer, another parent battling flu and constant sickness all the time, another parent in and out of the hospital for anxiety, etc. I am confident that the cancer, anxiety, and ongoing sicknesses of these parents was brought on and induced from autism. I read those books never thinking it would be me....but it is. Which is why this is important to blog. Not to blog about my own health because I want sympathy...but because its part of the journey.....its part of autism......unfortunately.
There is a youtube video that shows a doctor talking about autism on the news. This doctor stated that having a child with severe autism is the worst disability a parent can have their child diagnosed with. He is a doctor who specializes in various child disabilities. Many parents health fails when raising children on the severe end. In the past three months I have been in the ER twice with one hospital stay. I have seen several doctors with numerous test ran on myself. Would I be having my problems if it wasn't for raising two boys on the spectrum with one being severe? I really don't think so!
I am now on medicine to help my heart rate regulate correctly because due to the ongoing stress, my heart does not beat right. I am now on medicine for anxiety so I don't have any more panic attacks. I wonder why?
In a survey of 219 parents of children with autism, Sharpley, et al. (1997), found that more than 80% reported sometimes being “stretched beyond their limits,” with mothers reporting higher stress levels than fathers. The authors commented that the three most stressful factors are “(a) concern over the permanency of the condition; (b) poor acceptance of autistic behaviors by society and, often, by other family members; and (c) the very low levels of social support received by parents.” Subjective parental pain and consequent stress went unobserved.
When Dabrowska (2010) administered the Questionnaire of Resources and Stress (QRS) to 162 parents of preschool children with autism, she correctly predicted that the level of stress would be higher in parents of children with autism than in parents of children with Down’s syndrome or in typically developing children. Parents of children with autism also scored higher than Down’s parents on three QRS scales (e.g., limits on family opportunities), and higher than parents of typically developing children, on nine out of eleven scales. As well, she found that mothers of children with ASD felt more stress than fathers, but, interestingly, she did not find this problem in either the Down’s or the typically developing population.
Estes et al. (2009) investigated how child characteristics influence maternal parenting stress and psychological distress. Participants were mothers of preschool-aged children with ASD and mothers of children with DD (developmental delay without autism). Evidence for higher levels of parenting stress and psychological distress was found in mothers in the ASD group, and children's problem behavior was associated with increased parenting stress and psychological distress in mothers in both groups.
My body can't relax at all...NEVER! The first time I feel any small bit of weight off my shoulders is when Trenton is sound asleep in bed. Even at that, its nothing like a normal child because I have to worry about his wandering issues and escaping in the night. So there is never time to relax. If I am lucky and he is in bed before 8, I still can't sit on my couch and relax. I have to pick up the Hurricane 5 destruction and make the house look presentable for the start of the next day. Then, I have to get to bed ASAP because I never know if my day starts at midnight, two, or four AM. So I am on guard with high anxiety 24/7......again...we wonder why my health has declined along with many other autism moms.
Sources of Stress for ParentsDeficits and Behaviors of Autism. Research indicates that parents of children with autism experience greater stress than parents of children with mental retardation and Down Syndrome. (Holroyd & McArthur, 1976; Donovan, 1988). This may be a result of the distinct characteristics that individuals with autism exhibit. An individual with autism may not be able to express their basic wants or needs. Therefore, parents are left playing a guessing game. Is the child crying because he/she are thirsty, hungry, or sick? When the parent cannot determine their child's needs, both are left feeling frustrated. The child's frustration can lead to aggressive or self injurious behaviors that threaten their safety and the safety of other family members (e.g. siblings). Stereotypic and compulsive behaviors concern parents since they appear peculiar and interfere with functioning and learning. A child's deficits in social skills, such as the lack of appropriate play, are also stressful for families. Individuals lacking appropriate leisure skills often require constant structure of their time, a task not feasible to accomplish in the home environment. Finally, many families struggle with the additional challenges of getting their child to sleep through the night or eat a wider variety of foods. All of these deficits and behaviors are physically exhausting for families and emotionally draining. However, in families of children with autism this is a challenge. Scheduled dinner times may not be successful due to the child's inability to sit appropriately for extended periods of time. Bedtime routines can be interrupted by difficulties sleeping. Maladaptive behaviors may prevent families from attending events together. For example, Mom might have to stay home while Dad takes the sibling to their soccer game. Not being able to do things as a family can impact the marital relationship. In addition, spouses often cannot spend time alone due to their extreme parenting demands and the lack of qualified staff to watch a child with autism in their absence.
But my God shall supply all your need according to his riches in glory by Christ Jesus.