Fatigue and Friendship
In my previous editorial, An Invisible Army of Advocates, I addressed the question presented to me by an elected official, specifically why parents of children with exceptional learning needs are not more active at the political level. As I indicated in that column, there are many reasons. But a simple and incredibly important reason is that many are too tired to take on another task because of the day to day obligations associated with being a mom or dad.
In this post, I want to revisit and expand upon a previous article that was previously posted in the story of our family’s journey advocating for our son with learning disabilities. The original impetus to write that post was because of a conversation I had with a friend and former work colleague. We spoke about the many challenges faced by parents or primary care givers of children with exceptional needs. Let me share with you a bit about his family’s story.
My friend is one of those rare people who exude goodness. He and his wife are deeply spiritual and generous people. They do their best to remain optimistic and see the good in all people and in all situations. They have two children, one of whom is seriously affected by autism spectrum disorder.
My friend, his wife and their children moved out west about 3 years ago and across two time zones to our province from Ontario in central Canada. They made the cross country trek because their son, upon his 6th birthday, was about to lose access to vital rehabilitation and support services necessary to address his needs.
Without access to programs and services, this child’s potential to become as independent as possible as an adult would be seriously compromised. So, the family made the difficult decision to uproot and move to a jurisdiction where programs and services were still being made available to children with autism. The move was a sacrifice. They lost much in order to secure gain for their son. Among these sacrifices was the loss of immediate geographic access to their familial support system, their network of friends, employment seniority and benefits, holiday time, and so on. I am certain many parents would act in a similar manner if their situation was the same, but the reality is that most of us are not likely to be placed in the situation to make that decision.
The move could not have been easy. Fortunately, this family is part of a close knit church community. But, their ability to connect with a grandmother or grandfather, brother or sister, or other close relative is limited by distance.
Parenting children who are normal, whatever “normal” might be is difficult and often tiring. Parenting a child with exceptional needs is exhausting. The exhaustion flows from the day to day physical demands of being a caregiver, the need to be hyper vigilant to monitor the quality (and humanity) of the way in which the external world is interacting with your child, and the un-ending requirement to be an advocate for your child until he or she learns or becomes capable of advocating for themselves. And then there is the exhausting impact of worry – the sleepless nights and energy sapping condition of concern about your child’s wellbeing and future. This type of exhaustion is to the core and is not easily remedied by a good night’s sleep.
My friend and I both have children with exceptional needs. However, our family has a lighter burden than that of my friend’s. I shared with him the reasons for creating this site and what I hoped to accomplish. He encouraged me, and with insight borne of experience, raised the issue of the impact of a child with exceptional needs on a family… the fatigue, the impact on other siblings, the impact on the stability of a marriage or partnership in some families, the financial impact. It goes on and on.
Why share this story?
If you are parenting a child with exceptionalities, please know that there are those who understand how difficult a journey this is for you. We know you get tired and often discouraged. As another friend of mine said to me one time, “I love my family – my children, but sometimes I just want to run away and sit on a beach and forget what I am facing.” We understand.
If you are in the circle of people surrounding a family which cares for an exceptional child, please maintain the insight that sometimes the individual with whom you are interacting – be it in your role as teacher, physician, relative or friend – may be so physically and emotionally exhausted that it impacts how they may interact with you. Please be emotionally generous and give that person the “benefit of the doubt.” If they don’t call when you think they should, call them. Offer to babysit or help out in some way so that this adult can get some personal time and respite. If they don’t do what you think they “should,” perhaps you may wish to re-examine your expectations in light of their daily demands. Sometimes it is all in the mode of presentation. Encouragement rather than criticism is recommended. Most often, these parents are trying to do the best they can and could benefit from a cheerleader.
I will end by saying that our journey has enabled me to meet some extraordinary and generous people –people whom I consider to be heroes. For this, I am truly grateful and inspired.
Kathryn Burke, BA (Hon), MA is the founder of LDExperience. Follow Kathryn on Facebook and Twitter.
Originally posted by Sandra on July 19, 2009
Hip Hip Horay to all the wounderful parents! I continue to appreciate and look forward to every article you have written so well. Please continue in the spare minutes you find.
Hugs Sandra
Comment Originally Posted by Carrie Sandboe on October 20, 2009.
I remember working all day, coming home to raise my kids and then being on the computer for hours after they were in bed, writing letters and documenting my fight for proper education. I remember visiting numerous schools in both districts and writing endless e mails to principals looking for a placement. I remember sitting outside the offices of “powers that be” waiting for prearranged meetings to take place and being told they were “unavailable” to keep our appointment. I remember a multiple of phone calls trying to find private therapists to assess my child, at my expense.
I remember one June, waking to find my child asleep on the floor of my room.This continued for months, as did her nightmares and worries and drop in self esteem. The start of all this coincided with the writings of the grade 6 PAT exams at which time my child told me in a worried voice “I’m not doing very good”.
I remember leaving my 11 year old in a brand new school, across the city, with no friends, in a class of 3 boys, hearing her cry and begging me not to leave her.
Thank you Kathryn for sharing your story, and allowing me to share part of mine.
Kathryn;
Thank you for the work you have and are doing in regards to LD and exceptionalities in general. The more we can educate and make people aware of the strengths and needs of families with children with exceptionalities the more we will be able to work together. Yes, raising children with any exceptionality is tiring and is an own going process. To quote Martie – ” you will be an executive parent for your child for rest of their lives” ( paraphrased) – especially when it comes to schooling. There are many excellent teachers out in the system that helped with education of my children but each year there is an “education” of the teacher and support people that occurs. It is tiring work. It is hard on daily family life and requires a lot of sacrifice and patience. Keep up the good work Kathryn and Paul
it was suggested to me in 2006-07 that my son had ADHD. Since this time, his school has done what they can to help him in the class room, we have seen the mental health services in our community and have gone to a psychologist in our area. Finally we went to a psychiatrist in the area which was the least help of all.
It is now 2010 and as a result of finding some moms of children with ADHD online telling me there is an ADHD clinic in Edmonton I have finally been able to get my son in to see someone who actually treats ADHD kids. I will update this blog so perhaps my experience will help other parents who need help.