A Time for Change Part 2: Lack of Support in Special Education

Title: A Time for Change Part 2: A Lack of Support

To continue with this series, I want to talk about the lack of support for special needs families. Unfortunately, this topic is also connected to the previous one, but it’s still an issue on its own.

That said, lack of support is another big issue. More often than not, as parents, we feel alone. No support, no one there to help us, left to “figure it out” on our own, to try and find tools or even fight for those tools. No one is there to help us.

Lack of support, a person standing over the edge of a hole in the road with no way to cross.

If you have kids like my daughter, who are and can be “physically and verbally aggressive”, you find that people tend to walk away from you, leaving no one there to lean on, to talk to, to step in when the days are hard, or to just ask for help. What I have found is that this is an across-the-board problem. Which is why I will include some resources, or at least ideas, at the end of this blog for parents. However, while I would like to write strictly about resources (and maybe I will write another one to address that), this series is specifically about the lack of support for parents and students in special education.

I want to make one more thing clear as well. While many problems can stem from the school, with some special education teachers being part of the problem. What I have found is that the biggest issue starts at the district level. I say this in the nicest way possible, because some special education teachers do try to help their students and their parents.

So, now that’s out of the way. Let’s jump into this topic, shall we?

A mom feeling alone and helpless.

When it comes to special education, support isn’t there. Not like it should be. When parents ask for help and support, we get nothing. The district is always quick to put it back on the parents. A parent who doesn’t have transportation can’t come to pick up their child every day they are called, but if they don’t, they risk being accused of neglect by the district.

Let’s be real here, every district and school knows those details, and most kids in special ed programs like affective needs (like my daughter was) usually come from low-income families. Otherwise, believe me, we would pull our kids out in a heartbeat and place them in programs that would be a far better fit!! That said, when we, as parents, ask for help or solutions from the people who are supposed to be partners in our kids’ education, we are given none.

The district (and school) likes to be in charge. They like to call the shots. The problem is that the districts and schools should be working in partnership with the parents, not against them.

Let me give you some examples of what I mean by “lack of support.”

A torn piece of paper with the words: IEP

Scenario 1: A special education teacher who agrees in an IEP meeting about supports to help your student: (how to respond to the student, what steps to take in a situation (good or bad), makes plans with you about what to do in a situation, maybe even what verbiage to use to get them to respond. You prepare your student for what to expect. When it’s time, the teacher does the exact opposite, triggering your student each time. When confronted, they admit it and refuse to change.

Scenario 2: Child has a history of physical aggression both at home and at school. They refuse to come to school, and when they do, they get sent home. Being sent home reinforces the behaviors and makes it even more difficult to get that child to school, making mom or dad the target and even posing a safety issue for transportation. When addressed by the district and/or school, the district tells you that you have to get your child to school. They tell you things like, “This isn’t a choice. They have to be here. It’s your responsibility. If you fail to do so, we will have to take further action, including legal measures.”

A mom feeling helpless, with school officials talking in the background.

Your response: “Ok, so how do I get them here? When they are escalated, they beat me when I try. They attack me at home and also in the car. How do I get them safely to school?”

Their response: either crickets or “well, you need to figure that out.”

Scenario 3: When you tell the district that you are unable to pay for a ride every time to come pick up your child, because they decide to send them home.

Their response: they get rude, ignore your concern, and keep telling you, “they have to be here.” Essentially telling you that it’s your problem, not theirs. If they decide to send your child home, you’d better figure out how to get here to pick them up.

An empty box, with no tools or supports.

Scenario 4: You ask for extra support in class and notice your student is struggling. Or you ask for ideas on how to get your child extra testing. You ask for outside resources.

Response: “They get enough support, we won’t provide more.” “We can’t help you.” “They are just lazy, or it’s a refusal.” “We don’t have any.”

Scenario 5: Your child goes to a school in a day program. You are told, “Just get them here; we can support and manage them here.” You do so. Your child somehow elopes. You don’t find out until after the fact. You go to meetings, help with assignments, drive your student both ways, and you provide consequences for those days when things are bad. Then, at a meeting with the school and the district, the school kicks your child out, stating that you aren’t supporting them. In that same meeting, you discover that their idea of support is that you didn’t go into the school to help manage your student. In that same meeting, the district doesn’t defend you; they blame you.

The word agreement being torn in half.

Scenario 6: Due to your child refusing to attend school, you work with your District case manager and come up with a temporary plan for a reduced schedule in an attempt to ease them back in. Only when the head of the Department at the District finds out, do they come at you. Accusing you of failure to get your child to school, stating that an agreement doesn’t exist, even though it’s in writing. Then they give you a date for when they expect your child to be back full-time, but instead of honoring that, they drag you to court ahead of schedule, breaking the agreement they made with you and their own deadline.

I've had conversations with other families in my community who have had these or similar experiences, and unfortunately, I've seen similar scenarios play out in front of me as a Para. As a family, though, we have experienced all of these scenarios, except for one.

My daughter began eloping due to a teacher's refusal to cooperate. She eloped again from the outside school source, getting 1.7 miles away before they did anything. 1.7 miles from the school, .5 miles from the interstate, and 15.3 miles (a 5 hr. and 37-minute walk) from our home. This included crossing major highways and interstates. The same place kicked her out because I wouldn’t come, managed her behavior in person, something they assured me they would and could do, and the district didn’t even support me.

Fingers pointing at parents, blaming them.

The scenario about the district's case manager was also true. We had till February to get her back to school. They served us with court papers on the first day of Thanksgiving break, to be in court in two weeks. They set the terms, we made the agreement, and they broke them. Never mind that they failed to inform their attorney that they were taking a severe needs child to court, but instead told their attorney that it was a juvenile delinquent instead. Thereby blatantly lying.

With all the issues parents face, it’s no wonder they reach a point where they stop trying to work with districts. I hear all the time, “Well, these parents don’t care and won’t work with us.” Interesting…but you know what? Did anyone ever stop and think that maybe the parents feel that way because they don’t feel supported by the school and the district? I know I felt that way. Why should I work with the school if all that happens is broken agreements, constant bullying and threats, and zero help? It erodes trust among the parents, the school, and the district. All of this goes back to zero support for the parents.

A mom standing at a podium, holding a piece of paper, and fighting for her child. In the back, signs that say: "Support Special Needs Kids" and "Support Special Needs Families."

The issue comes down to this. Support for students and parents is not there. When parents ask for help, we don’t get it. We get the runaround, are bullied, have agreements broken, and are made into the bad guys. When we, as parents, don’t feel supported or heard, when we are left standing by ourselves with no answers, resources, or tools, we give up trying to work with schools and districts.

We fight every day for our kids, and we deal with things at home that wear us down and drain us. We go into what I call “survival mode.” Sure, schools and staff have to deal with the issues at school, but it’s the parents who deal with it all. As school staff, we get a "break" when the child goes home. But as parents, we are always on guard, always on alert, and we don’t get a break.

For low-income families, this makes it harder. We can’t afford to put our kids in programs outside of a public school, even when we know it would probably be better for them. Some struggle with transportation or mental health supports at home, not just for their child, but for them. Parents can get PTSD from what they go through with their students and districts. We get it from all sides; it’s a rollercoaster with our kids and whiplash with the districts. Some of us cry ourselves to sleep at night, I know I did.

A set of parents, their child and a teacher working together.

As parents, we want to be heard; we know our kids better than anyone, even the so-called experts in the district. We want people to see us, hear us, and support us. Supporting our special needs students in school is supposed to be a partnership, and that means supporting parents. Yes, we are there for the IEP meetings; we have to be. However, that doesn’t mean the districts see us as partners, because, as parents, we feel more like outsiders and, in some ways, we even feel alienated by them.

When districts start supporting parents, finding ways to work with us, to support us for the betterment of our children, when they start seeing us, hearing us, and acknowledging us, then we might have a chance to actually form a mutual and strong partnership that can help cultivate a proper educational environment for our children.

There is so much more to this subject; my experience is just one of many, but it's clear that this is one of many changes that need to happen in our special education programs if our students are to be successful and we, as parents, are to feel like part of the team. If Districts and schools want parents to work together with them, they have to first support parents.

As for my experience, I didn’t share everything, nor did I mention how we got through those issues. There just isn’t room to do so. However, my book includes a whole chapter that details some of those experiences, our journey through them, how God supported us, and the outcome for our family. If you want to read about that and how God got us through that, then I encourage you to read my book Never Alone: A Story of God’s Faithfulness and Love.

God bless,

K. M. Leffler

Resources:

However, as promised, here are some ideas for resources. Important note: I can only provide resources for Colorado. However, you can take these ideas and search for your area. At least it’s a place to start. This is not an exhaustive list; these are places that I personally know about. If you know of any (in Colorado or another state), please let me know, and I’ll add them as resources. Finally, I can't promise that any of these places will be a fit for everyone, but I feel confident that, at the very least, they can possibly help direct you to programs that can.

The ARC of Colorado – helps with advocates

Disability Developmental Resource Center in Lakewood and North Metro Community Services in Thornton  – provides help for families and children with developmental disabilities, including educational resources, respite care, funding for home modifications, assistance with state resources (Medicaid, State Waivers, Adult Waivers), job placement, etc.

Ability Connection Colorado - Guardianship and other resources

Parent to Parent of Colorado – connects families to emotional and informational supports ( I know that they have a group on Facebook for supporting families)

Center for People with Disabilities – helps with information, resources, and advocates.