LDExperience

During a social event, an important question was posed to me by a School Trustee.  He asked why parents of children with special needs are not more active at a political level, particularly given the number of children who have exceptional learning needs. This particular Trustee had invested a considerable amount of effort in learning about special needs and in trying to effectively represent this constituency. His question was genuine, and in part fuelled by some frustration at failing to see parents of children with exceptional needs at Public School Board meetings speaking to agenda items about special education. The visible presence of this constituency at public board meetings would certainly help to shine a spotlight on special education at School Board Governance.

This question made me think many elected officials– whether at the local, regional or national level, are laboring under the misperception that everything is “fine” because parents of children with exceptional learning needs are not overwhelming school board meetings or running for public office.

If you are in a policy making role or you advise elected officials, I wish to disabuse you of the notion that many of us are silent because we are completely satisfied with the “system.” Many of us simply elect to confine our advocacy efforts to the day to day contacts in our child’s life. As such, are invisible to you though we do comprise an army of advocates. In fact, our day to day lives are infused with advocacy. And ironically, as parent advocates, just when you think things are going well, it seems like something comes up to remind you, in the equivalent of a situational slap in the face, that you can never let down your guard. As a parent of a child with exceptional needs, you are always an advocate.

Please recognize that in penning this editorial, I am not citing scholarly articles or parent surveys. I am drawing upon the many interactions I have had with parents and professionals with whom I have had the privilege of meeting during the journey of advocating for our son.

There are several reasons why parents of children with exceptional needs may not take on a more public advocacy role. The first, and perhaps most important, is that most are both overcommitted and exhausted. Pervasive fatigue is a constant companion among parents of exceptional children. Indeed, I would go so far as to say that among two parent families, fatigue is the “third spouse.” For single parents, fatigue is equivalent to a common law companion. The dominant reason for the fatigue may change over the years as a child grows and enters the teen years – at first being more from the physical and time demands of addressing the needs of a child and later, being more emotional in nature.

Parenting a child with special needs is unrelenting. Being an advocate takes energy and time. When you are short of both, it is hard to investigate a policy issue and then get to a public board meeting to speak out about an issue. A parent may be equally pressed for time to write an email or letter and advocate in that manner.

And, writing can be a problem – in many ways. For centuries, the foundation of advocacy has been through writing. We are all familiar with the sayings: “The pen is mightier than the sword!” or “Put it on paper!”  “Document that please, and we will look into it….” The written word has served as the advocate’s primary type of ammunition. However, many parents of children with learning disabilities also have learning disabilities. The dominant disability is dyslexia or reading disabilities that impacts a person’s ability to read and write. The dyslexic parent may not have the confidence in their writing ability to put pen to paper, or the more modern equivalent of opening up a word processing program, to document a concern or to provide a written essay on a policy issue that is being considered by some level of government. Indeed, if they spent most of their school career avoiding writing because they had dyslexia, then it is unlikely that this would be a preferred advocacy channel.

We also live in a society where it is easy to blame and shame. The tendency to throw blame around is also another reason why some parents of children with exceptional learning needs may not take on a public advocacy role. They do not want the abuse. Many parents I have asked have indicated that they have been blamed for their child’s exceptional needs.  Essentially the script goes, “Your child has this problem because of things you have done so you are at fault and you can fix it!” To the parent who is trying to support their child to the best of their ability, this stance is so malevolent. One parent I know was blamed by an elected official for her son’s learning disability because she had clearly drunk alcohol during her pregnancy. She had not touched a drop, nor could she be described as a drinker.  But the default option amongst some officials is that parents of kids with disabilities cause it themselves. The situation becomes particularly sad when the blaming and shaming is done by professionals and policy makers as an excuse not to address the needs of a child.

And grandparents, sisters, brothers, aunts, uncles, friends, mother in laws, etc., may also get into the act by spouting wisdom that the problem with your child’s learning issues is lack of discipline, or lack of books in the house, and on and on. When you are battered and bruised in your role as a parent, you may not be too willing to stand up and take on the world as a public advocate.

Following upon the notion of external blame and shame is the unfortunate guilt that some parents harbor. As noted earlier, it is not uncommon for a parent who has a learning disability to have a child with learning disabilities. The current research clearly indicates that there is a genetic link to learning disabilities. Some parents are racked by guilt about passing along this characteristic to their children. And there are other factors that can “lay on the guilt.” Emerging research about neurotoxins (often found in cleaners) results in some parents feeling guilty that they may have caused their child’s LD by using an inappropriate cleaner when pregnant. I know parents who are guilt ridden about having given consent for the children to have vaccinations, believing that this may have precipitated their disability. This is particularly the case for parents of children with autism spectrum disorder where a huge debate about the role of vaccinations causing ASD continues to rage on. Constant guilt erodes a parent’s self esteem. It takes guts to stand up in a public forum to outline a position. When your own self worth is challenged, you may doubt the veracity of your own opinion. It renders you mute.

I was thrust into education advocacy by fighting to keep a school open. This experience served as “advocacy boot camp” for me and I am so grateful for the lessons I learned during that battle. But still, as a professional person with a graduate degree to my credit and a speaker at professional conferences across North American in my chosen field, I was initially very tentative about wearing the mantle of a parent of a child with special needs. I feared censure and ridicule. Ironically, I “came out” about our son’s special needs in front of TV cameras while challenging the school board to do what I thought was the right thing about a proposed school closure. I indicated that the District had done some exceptional things and cited my son’s new school as an example. I did not plan to step into the role as a special needs parent advocate at that time. But it was a pivotal moment for me and one that I have not regretted at all.

To the parents of children with exceptional learning needs who may be reading this editorial, I would encourage you – when you are ready and when you have the energy – to consider taking on a more public advocacy role to complement that which you have done on a daily basis for your child. If you have a disability, please also consider using the skills you have learned to self advocate to advocate for others in a more public arena. Our voices need to be heard. OUR VIEW IS WORTHY. Please consider that your advocacy may prevent or minimize the difficulties experienced by another parent or personal affected by exceptional learning needs.

To politicians and professionals, please do not, for a minute think that silence is acceptance. Please do not immediately discount the voices of the same small group of advocates who, for a variety of reasons, are comfortable and able to speak to you within a public arena. Many of us speak out or write because we recognize that others are unable to do so. And certainly, let us immediately extinguish the shame and blame mindset. Our collective mission is to maximize the potential of all children, including those with special needs. Let us focus our attention on that more important activity.

An earlier version of this editorial was originally posted in the Journey section of LDExperience.

Kathryn Burke, BA (Hon), MA is the founder of LDExperience. Follow Kathryn on Facebook and Twitter.

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