the power of why and special education

Who do you want to be in life, my friend? I was ruminating over this very thought early morning driving home after a workout. My mind is always clearest then. 

The truth is, I am fearful of living an uninspired life. But it is also incredibly easy for me to forget what matters most to me. I live in my head. Like all.the.time. Underlying anxiety helps me obsess over things that don’t matter one bit to me- that in the moment, I think matters so (so) much. There is so much noise out there, AND there is so much noise in my head. Sometimes I write for the quiet.

Popular author, Simon Sinek, says great leaders and organizations start with "why" they do what they do, rather than simply focusing on "what" they do or "how" they do it.  He defines your why as being your purpose, cause, or belief. It explains why your business exists and why your customers should care. It should guide every decision you make, and if your actions are aligned with it, build trust with the kinds of customers that align with it. 

Understanding your why isn't just helpful for business- it's helpful for humans like you and me who want to live an inspired life. So here I think about why I wake up every day, why I do what I do, and why I believe what I believe in this noisy world.

• I want to be kind. I don’t mean that in a virtue signaling kind of way. (Virture signaling: a derogatory term- the public expression of opinions or sentiments intended to demonstrate one's good character or social conscience the moral correctness of one's position on a particular issue.) I can be kind when it’s convenient, but I want to be kind even when it’s inconvenient. I know how dang warm and fuzzy kindness feels and I want to give others that same feeling. Kindness and connections with others is part of the very marrow of life. That’s why I love writing- it helps you and I connect.

• I don’t want to be so hurried that I don’t see others. Truly, deeply SEE others who are doing great small things with their time and talent and life. People who serve me or my boys. People who inspire me. I want to SEE the people who may go unnoticed or under-appreciated. I’m so inspired by the stories others are quietly living. Not the rock star or the politician but the every day human. 

• I want to be self aware in a way that is empowering, not paralyzing. (self aware is NOT self-critical). According to Understood.com, “Self-awareness is the ability to tune in to your own feelings, thoughts, and actions.When people are self-aware, they understand their strengths and challenges and know what helps them thrive.”A lack of self awareness can hurt those around us. If you grew up with parents who lacked it- you understand. When we refuse to examine who we are, how we are, and most importantly why we are the way we are- we can’t grow. 

• I want to be curious. Open to people and opinions that are different from mine. I want to continue to learn about things that make me feel alive. I want to try new hobbies and learn new skills. I want to write and share with me and with you.

The boys are about four months into their school year in St. Louis Missouri, and the routine finally feels like our new normal. In so many ways my boys are just a normal Middle and High Schooler, they want to do well in school, they want to have friends, they want to spend their time doing things that matter to them. But in many ways they are so different too, and what they need and who they are is unique.

The amount of time and effort I’ve put into advocating for the boys, and getting them the outside resources they need to make up for what they weren’t getting in school was a full time job, and now I don’t quite know where to funnel that time and passion. 

People ask- "How is Special Education so different in Missouri versus California?" I’ll speak in generalities- because it’s a much bigger concept than my boys needs. Keep in mind we are one family and this is our experience, although I hear from many who unfortunately had the same experience we did.

The difference I’ve seen can’t be attributed to a lack of time, money or resources. Our old District had so much money in reserves, and tax payers always approved the new Bonds that were proposed, often totaling hundreds of millions of dollars. I attended Board Meetings, met with Board Members, and constantly researched to understand how it all worked.

I don’t want to bog you down with logistics- but they matter big picture, so I’ll be brief. Our previous District was 90% minority and 65% low income. As an educated, stay at home mom who speaks English- It was a luxury to be able to advocate. Statistically- my children are at an advantage because of this, and that is extremely unfair to all the other students. Silence in the face of wrong doing keeps broken things broken. When I went to IEP meetings, I advocated for my boys, but when I was at Board Meetings or interviewed for Media, I advocated for system changes for all.

I can’t deny strong standard operating procedures and steadfast systems in place is imperative. There are so many moving pieces required in this machine called Special Education. Our previous District had over 70,000 students. (Our current District- which is its own “Special Education District” not a local neighborhood District is around 20,000). But at the end of the day- everyone we interact with now- From Case Managers, to General Education Teachers, to Principals, to PE Teachers seem to remember their own WHY.

1. Here my boys are presumed capable of learning and deserving of modifications/accommodations their disability requires. They are not treated like a burden or hindrance from General Education students getting additional bells and whistles. Here's an imaginary example of how that feels in real life. 

Imagine Greyson is allergic to the color green, and let's say this can be a common effect of autism. It is recommended that he wear special glasses to counteract the color green, and when he does this at home- it's successful. I would gather information on how his Green Allergy affects his learning and what he needs because of it. I would bring in the initial evaluation or assessment done by a Physician or Psychologist. I would gather data and Guidelines from reputable sources that all Educators or Therapists follow. Then imagine I go to an IEP meeting to present this information and be gaslit with things like..

He doesn't look allergic to green to me. 

He might be allergic, but that doesn't affect him in school. 

We can't keep track to make sure he wears the special glasses. 

Our First IEP meeting in Missouri went like this...Me (with my big ass binder of paperwork and guidelines and hopes and dreams). Educator- We noticed Greyson is allergic to green. This is very common with autistics, so we have been taking data on it to confirm. If it is alright with you, we would like to offer him these special glasses to help him. We would also like for our OT to evaluate him because there are other accommodations we can provide that have helped other Green Allergic Kids thrive. Is that ok with you? Is there anything you are doing at home for this that we can make sure to apply here?

We didn't have to fight for a thing. They truly see my boys and things are offered before we even have to ask. 

2. My children are treated like they are an integral part of the School they attend. Not an inconvenience or an afterthought.

When Parker was in first grade, I asked about that night’s Holiday school program I saw on the newsletter. I was told his class did not participate. I spoke to some other Special Education Parents at the school who shared they had never been included to the School Holiday Programs, or the All School Awards that were given out quarterly. They were categorically denied access based on their classroom placement, not based on their abilities. They were also not included in General Education Field trips, General Education PE or art or library time or music. There are no one size fits all inclusion plan for any student- but denial regardless of abilities is not ok. There are National Laws that protect students to these things don’t happen- but there is no internal policing- no one calling out institutions if they are not following the law. That’s why Parent involvement is important. I would speak out, and as you can imagine, this did not win me any popularity contests. I received a Cease and Desist for speaking out, and I was harassed on Facebook by Teachers at school. One Teacher was put on administrative leave due to the messages she sent. Speaking up came at a cost, but in my opinion, silence was much more costly to my boys' futures and my own soul.

HERE is an article that was written on this incident.

3. The people they are surrounded with are well versed with their disability, and the modifications, accommodations, therapy, teaching strategies, and support they need to access the curriculum. They are empowered with Professional Development in the areas required to effectively do their job. It doesn’t matter how much money your District has if they do not value Special Education. I would sit through Board Meetings discussing multi-million dollar swimming pools and Gym Floors, yet our para educators in Special Education made less per hour than our local fast food places. Occupational Therapists and Speech Therapists were given IMPOSSIBLE case loads, and they were not allowed to tell parents if a student was not getting their required minutes of therapy noted on their Individualized Education Plan- a legal document detailing the child's educational needs. When I started requesting service logs - I would see that my son was shorted hours of therapy alloted to him in his IEP. Certain therapies for autistic kids is like insulin to a diabetic.

I can't tell you how many times I had to FIGHT for simple things like a visual schedule for my boys- a universally accepted Evidence Based Practice for Autism. It felt like bizarre-o world. There were so many IEP meetings where I just went to my car and cried when it was over.

There were no Experts in Behavior (Board Certified Behavior Analysts) supporting the District. There were numerous Teacher, Therapists, and Classroom assistants vacancies leaving shortages in the classroom. A Special Education Classroom can not run effectively without enough staff. Some things that were said and done in autism classrooms were so completely wrong and backwards, sometimes downright abusive- it was clear that there was a significant deficit in understanding autism. It's terrifying to drop your child off in an environment that doesn't understand them.

4. My boys and kids like them are not socially isolated. Special Education students are given a General Education homeroom. Anything a 6th grader does at school- Parker is included in. And not just Parker- all students with disabilities if it is appropriate for them. This means electives like Art or Music, and Field Trips. The magic sauce that makes school a wonderful place to be.

Parker being included in 6th Grade Camp in his first few weeks of school. He had the time of his life. OF HIS LIFE!!!!

My boys aren't placed in out of the way classrooms isolated from the General Education and expected to stay there all day.  

Here is an excerpt to a statement I made to our previous School Board in 2018: 

"My son's physical classroom is an old portable unit, approximately 100 yards away from the school. There are no general education students that attend school all day in these portables.The segregation of children with special needs is a violation of IDEA- The Individuals with disabilities education act, a federal law that ensures equal treatment for all students with disabilities. 

Greyson's classroom is cramped and lacks much natural light. The floor is soft in some areas and unstable. When it rains, the students with autism cannot travel to the cafeteria for lunch. The actual school is approximately a football field away, which is too far when the walkway is filled with puddles. On these days, the students remain in the portable units all day. Having special needs is already an isolating condition, and having autism makes socializing difficult for these students. These children do not need physical segregation added to their struggle. While these children have spent six hours a day in a portable classroom, three multi million dollar swimming pools have been built by this school district. I am not asking for extras. I'm asking for basic facilities that serve the most fundamental needs of these children. "

HERE is an article written about this inequity that I am quoted in.

The first time I spoke up at a Board Meeting. I was scared to death. It's ok to be scared, as long as you do it anyway. You get the courage after. 

Once I received a message on Facebook from a sweet Momma of a General Education student in Greyson's grade. Grey did inclusion 30 minutes a day, a few times a week. “My son was in Mrs. (awesome teacher's name) class when Greyson would come in. He would see you guys in the parking lot in the mornings and tell me all about him. I asked if he ever played or talked to Greyson. He said no, because “He has autism and they keep him separate.” It made me sad because my son would have benefited from a relationship with Greyson as well.”

These honest words crushed me and also helped fuel my fight. Now my sons' classrooms are integrated in the heart of the school. 

I share all of this to shine a light on our experiences, and experiences like this all over the world. I have nothing but empathy for the Educators and Therapists who are expected to deliver the impossible without the time or resources they need for their Special Education students. We also met some insanely incredible Teachers in this broken system whom we will love for all our life. I believe people originally go into these fields to help children.These professionals are not to blame for broken systems, and I understand how some institutions can beat the why out of someone. 

Never underestimate the power of speaking up. Even if you are the only one. At the end of the day I realize, if we don't have our own WHY, we have nothing, and those hard years of advocacy taught me so much about my own.