Friday, October 24, 2014


I know I get on here and rant about the stress of autism. My rants don't do it justice by no means. Its one of those things that you simply have to live it to fully understand. By no means do I expect anyone to understand. I wouldn't want you to understand fully because if you do, you are living it.

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 Parents

Deficits 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.
Reactions from Society and Feelings of Isolation. Taking an individual with autism out into the community can be a source of stress for parents. People may stare, make comments or fail to understand any mishaps or behaviors that may occur. For example, individuals with autism have been seen taking a stranger's food right off their plate. As a result of these potential experiences, families often feel uncomfortable taking their child to the homes of friends or relatives. This makes holidays an especially difficult time for these families. Feeling like they cannot socialize or relate to others, parents of children with autism may experience a sense of isolation from their friends, relatives and community.  Concerns Over Future Caregiving.  One of the most significant sources of stress is the concern regarding future caregiving. Parents know that they provide their child with exceptional care. They fear that no one will take care of their child like they do. There may also be no other family members willing or capable of accomplishing this task. Even though parents try and fight off thinking about the future, these thoughts and worries are still continually present.  Finances. Having a child with autism can drain a family's resources due to expenses such as evaluations, home programs, and various therapies. Because one parent might give up his or her job because of the caregiving demands of raising a child with autism, financial strains may be exacerbated by only having one income to support all of the families' needs.   Feelings of Grief. Parents of children with autism are grieving the loss of the "typical" child that they expect ed to have. In addition, parents are grieving the loss of lifestyle that they expected for themselves and family. The feelings of grief that parents experience can be a source of stress due its ongoing nature. Current theories of grief suggest that parents of children with developmental disabilities experience episodes of grief throughout the life cycle as different events (eg. birthdays, holidays, unending caregiving) trigger grief reactions (Worthington, 1994). Experiencing "chronic sorrow" is a psychological stressor that can be frustrating, con fusing and depressing.

Philippians 4:19
 But my God shall supply all your need according to his riches in glory by Christ Jesus.

1 comment:

  1. As my son falls asleep on my shoulder right now (4.5 years old nonverbal ASD) I feel your pain. Jojo stopped sleeping right around the regression at 9-12 months. I read your blog about shots and Amish and I totally agree with you that the shots have some sort of impact. Jojo was great until he got to the heavier place in the shot schedule. He was showing signs of immune system overload with asthma and skin allergies, but I did not recognize it, because I knew nothing about autism. I trusted my doctors who just kept saying, "This is best!" Anyway, back to your sleepless nights. I know you pain with only one little son who was sleepless. I signed up for your blog tonight and I want you to know I will be praying for you. I had so many praying for my Jojo to be able to sleep. Three years of 12 am or 3 am play times until 8 am in the in the morning and I was a walking zombie. My thoughts got so wacked out, I gained 40 pounds, etc. etc. I would cry out to God for help, and He kept reassuring me that He would help me. He sent me Dr. Noah via the internet (we serve in India) and we started Jojo on the gluten free cassein free low sugar diet with all sorts of supplements to heal his gut. I know you shared that you did not see any difference in Trenton. I am sorry about that. With Jojo, we saw a big difference with the gluten. And on my birthday, God told me, "Sarah, I am giving you a gift." He slept 8 hours. Then he slept 8 hours again! (with 5mg of melatonin at 10pm each night) and he has slept 8 hours a night since- about 9 months. I am going to pray for God to give you that same gift. I totally understand what you mean about the anxiety and the fears of them wandering out at night, etc. I want you to know you have a sister here in India walking this journey with you. I know how important it is to have friends in this incredible walk. Blessings! See you again soon! Sarah