It’s Time To Tell Our Story

Being a parent is rough. It’s as if overnight, our lifestyles change and we are thrust into an entirely new phase in our lives. There’s no preparation- only the knowledge that a child is coming.

But once that baby gets there, nothing else exists. There’s no fighting it- that baby is everything, and all we want to do is watch him (or her) grow happy and healthy.

This was my story.

So naturally, hearing the specialist diagnose my son with autism was jarring- I kept wondering if there was something I could have done differently. Well if hearing the diagnosis was difficult, then the road ahead would be the toughest challenge yet.

This blog is for the parents and families that have been affected by autism.

This blog is for the beautiful souls who had been blessed with a different ability.

This is our story.

 Black and Autistic; A Mom’s Perspective

“Why is everyone so loud? The lights are too bright!!!” 

                                   -possibly any autistic child at some point in his ot her life

A child hops on the school bus- happy and hopeful about the upcoming school year. Today is his first day of kindergarten, and though this year he is entering a new environment, he is looking forward to making new friends. When he arrives at his new school, he is met by a woman who introduces herself as his 1-on-1; an aid who stays with and assists him throughout his school day. She takes his hand and together, they embark on a new adventure. He quickly finds his new environment overcrowded and overwhelming. Coming from a class with a 5:4(?) child-to-teacher ratio, he has a difficult time adjusting to the hustle and bustle of a general education setting; as a child who is diagnosed with autism spectrum disorder and speech/language expressive/receptive disorder, he expresses his dissatisfaction the only way he knows how- by stimming, a common reaction of autistic individuals when they experience sensory overload. To offer a bit of clarity, stimming can present itself as repetitive behaviors, like scripting- repeating the lines from movies and TV shows, or rocking back and forth. School officials frown on this behavior- this is not conducive to a general learning environment. In an effort to suppress the child’s stimming, they give way to a more destructive behavior- meltdowns, which look more like a temper tantrum than a sensory response. 

Over the year, Mom notices a change in her son’s behaviour; he’s having more and more meltdowns and his disposition has changed. Mom frequently shows up at school unannounced (working as a substitute teacher has afforded her the ability to take time off when necessary), and notices a disturbing pattern- he’s always with the principal; always separated from his classroom; sometimes he sits in a room alone with just a desk. When he is in the classroom, he sits at a desk facing the window, with his back toward his classmates. She witnesses incidents in which he is physically restrained, but receives no report of it. Mom advocates- to no avail. The school looks at the black, single mother as more of a category than a person with thoughts and feelings. When she expresses her displeasure, school administrators compliment her on her ability to articulate herself, which only furthers her annoyance. School officials create a behavioral intervention plan, and in the written correspondence, describe a child whom the mother does not recognize. She teams up with local organizations to attend IEP meetings with her. They dont find anything wrong. The frustrated mom waits for her opportunity; she is afraid that if she speaks too early, the school might retaliate by further mistreating her son. When she has gathered enough evidence to thoroughly confront school administrators with what she believes is unfair harassment of her child, he is labelled physically aggressive. School administrators claim the other children are afraid of him, but mother has been to the school, has eaten lunch with her son and watched the children happily play tag with him during recess. Mom feels alone in this fight. 

If this story sounds familiar, you are not alone.  

We live in an environment where a great deal of our black children are mistreated in institutions that are supposed to aid in the practice of guiding them through their formative years- we call this unwritten rule the preschool-to-prison pipeline. We are familiar with the practice, but most of us have not experienced the displeasure of learning that our most vulnerable populations are not exempt. 

I’m gonna just put it out there-I never chose to live in a predominately white area (there- I said it). We just kind of landed here. We stayed for the resources, which I’ve noticed are plentiful and very necessary considering the circumstances (as a single autism mom who was diagnosed with chronic leukemia, depression, ADD it’s hard to find the resources that would keep us from sinking in an uncaring world). I oftentimes wonder why it’s so hard to find the same resources in predominately black areas- why isn’t there more government funding in urban areas geared toward keeping families housed, happy and healthy? 

For our black autistic “kiddoes”, Frederick County, Maryland presents its plethora of resources as more of a double-edged sword than a helpful haven. Resources for the growing community of individuals with special needs have demonstrated a genuine lack of understanding about what would truly benefit (our) populace. Resources, while plentiful, are subpar- and I can’t write that confidently because given the racial tension here I know my black son has experienced access discrimination, which means that perhaps the services aren’t subpar; perhaps the services available to us are just mediocre. A history of racial inequality coupled with a general reluctance toward understanding black culture places our children at an even greater disadvantage. Add autism and stir; Voila(!) you have a black male who, without advocacy, will be ostracized with little to no consequences.

This blog is a clarion call to those of us who want to change the direction that our society is headed. We often want to see change, but we only feel compelled to fight for the causes that personally affect us, and I understand- guilty as charged. We all are. We love to quote those who inspire us to do better, but realistically, the closest we are to doing better is posting up quotes on twitter. Do we really believe that our society is “only as strong as its most vulnerable member”? Do we even care? Why aren't we talking about this more? Perhaps it’s time we ask ourselves these questions.

As for the kindergartener at the beginning of this passage. He’s doing great. He’s 13 now and he’s headed toward his eighth grade year. He was taken out of the Frederick County Public School system and homeschooled after fourth grade. While he’s had some hiccups, he has grown emotionally and intellectually. The meltdowns have slowed down. He stopped asking if he’s “ugly” or “dumb”. He’s thriving in most areas but could benefit from more opportunities to be around his peers. As a teenager, he’s experiencing the normal growing pains that come with puberty but he’s a cool kid. He’s my son, and that stressed-out mom- you guessed it-that’s me. It’s nice to meet you.

We’ve become complacent with this realization.