Monday, May 12, 2014

Not Like My Child: Parenting and Low Incidence Differences

I just read an article on a Facebook community page by an autism mom that was meant to be a heartwarming narrative of her autistic son, who is my son's age. She said he was special, but not. She goes on to proudly describe how he successfully navigates a social event and concludes by making it clear he is just like his siblings but he tells her not to be concerned that he is an intersected autistic preteen. He assures her he will be fine. Throughout the narrative, there is the mention of her son's race, and that his race will present challenges when he is an adult, just as it does for other Black males. She makes certain to emphasize he has worked his way to full inclusion, an opportunity to blend in with a "normal" school population.

The author describes her son with pride. Based on her descriptions in the article, her son seems to wear a function label (I intensely dislike function labels but need to use them here to make a point) that is implied as being "high". His label is autism, but the supports and services needed are considerably different than 13% of his autistic peers who are nonspeaking and have health and educational challenges in addition to different neurologies that prevent them from "passing".

Autism is described as a "low incidence" disability along with  blindness, low vision, deafness, hard-of-hearing, deaf-blindness, significant developmental delay, complex health issues, serious physical impairment, multiple disability. In addition, per the National Center on Accessible Instructional Materials , it should be noted that:
None of the disabilities listed under low-incidence disabilities generally exceed 1% of the school-aged population at any given time. The relative rarity of students with these disabilities in public schools often poses significant challenges for local schools struggling to meet their needs. Since they encounter these students so infrequently, most local schools have little if any knowledge of how to best educate these students, of what technologies are available to assist them, and of how to obtain needed and appropriate support services from outside agencies. All students with low-incidence disabilities thus experience a commonality: they are difficult to serve in current local public school programs.
I don't blog about high incidence disability. The author of the FB article's son, while falling into the same diagnostic and racial category as mine, is "not like my child." Yes I finally had to go there. My son carries additional labels that place him in a group that is rarer and has a  need for more comprehensive educational supports, accommodations and services. Although both boys are the same age and race, and carry the same label of autism, the expression of autism in my son is clearly not as it is expressed in her son. Thus the trope that frustrated parents who react to reading the prominently placed posts of those authors who wish to brag about the accomplishments of their assimilating children  just came from my mouth. This is something I've tried to avoid for the entirety of my blogging history.

I went there to make the point that there are pitfalls  to narratives from mothers about their children that they have a perfect right to produce and publish, but which tend to overwhelm the autism conversation at the expense of families and people who have low incidence disability profiles and are told they cannot set full inclusion as a goal despite the intensive supports that the IDEA is supposed to provide. Students who must not only fight for inclusion and respect among their peers in age, but must meet ableism head on because they can't make themselves invisibly average in a classroom.

Students like my son.

I once tried blogging in response to the plethora of blog posts about the lives of autistic children and  preteens who use verbal speech, but whose parents insist on speaking for them rather than having them speak for themselves. My husband and I used to go to parent support group environments, and parents would beginning immediately comparing their child to ours, undermining our efforts to help our son in order to make themselves feel better about their own children. "At least he isn't like your son" was the most common sentence we heard. True. My son has parents who don't measure him by the yardstick of how "normal" he is or how much he compares to others with similar labels. We measure his success by how far he's come from where he started and how much he is able to do for himself.  I need him to know that he exists beyond constraints that others, regardless of intention, place upon him by such comparisons. So I ceased trying to blog in counterpoint to those themes and just began writing and speaking in support of people like my son.

The idea that a child needs a comprehensive individualized education plan and more support than their peers within the spectrum should not diminish their right to be heard. My interest in the continuing battle the very courageous Henry Frost , who continues to fight to not only be included in his neighborhood school but to make his neighborhood school district a safe one, is the direct result of knowing Henry, who is older than my son, is very much "like my child." Henry's voice needs to be heard again right now, but I truly don't believe anyone is listening.

Henry is a student in a school district that has had three students "like my child" die, two of those students dying in the last year. These students died while in the care of the school system that has fought Henry Frost tooth and nail to resist giving him what the law says he should have. Henry Frost and his family are beyond brave. Read about what is happening to students "like him". It is not a heartwarming tale of hope for invisibility and "passing". It is what Henry is facing down in order to stand up for my son and all those "like him".  Don't know what I am talking about? Here watch this, but I need to warn you it is raw footage of a child dying on a school bus in Henry's school district. Read this, and this.

The narrative on autism  online was so polarized and rigid that I had to search through hundreds of blogs and autism communities before I began to find what I was looking for. People who were autistic adults and "like my son". At the point when I began to correspond with them and autistic professionals who worked with nonspeaking autistics everything improved for our family. If you are one of the many parents who read one of the endless articles out there by proud parents on how well their preteens are assimilating to main stream life, or one of the other articles of depressive despair written by parents of autistic children who have considerable challenges, don't give up. There are other voices out there, Voices that understand you, your loved one, the civil rights you are fighting for, and are with you. Not in despair, not in hubris that diminishes others in order to elevate their own. In solidarity and love. Let me save you some search time. Try the blog We Are Like Your Child by clicking here.

Henry Frost, and all those like him including my son, regardless of whether they are categorized with multiple, complex, low incidence disabilities have a constitutional right to a free and appropriate education with the supports and resources needed to accomplish that goal. All of our children have a right to go to and from school and be safe while they are being educated. This is not about money or the things the schools need to deliver that constitutional promise. It is about the legal obligation public schools funded by our tax dollars have to do so.

It is about inclusion, justice,  and human rights for all members of society. 



For Henry Frost, in solidarity. I will always stand with you.


  1. I never quite realized until this moment...that when parents' highest hope for their autistic child is that they'll be "indistinguishable," or able to blend's not just physically and emotionally and functionally bad *for that kid,* it's an effort to distance that kid from being perceived the way that kids like yours are, instead of tackling head-on the ways that most of society thinks it acceptable to underestimate and mistreat them.

  2. I stand with Henry. I stand with you. I stand with your son. Love and solidarity, Ib

  3. Standing along side you as well <3